Information Needs and Satisfaction with Information Sources among Men with Newly Diagnosed Local Stage Prostate Cancer and their Spouses Lisel Koepl, MPH1, Catherine Fedorenko, MMSc1, Andy Karnopp, BS1, Chunyu Li, PhD 2, Ingrid Hall, PhD, MPH2, David

1
Information Needs and Satisfaction with
Information Sources among Men with Newly
Diagnosed Local Stage Prostate Cancer and their
SpousesLisel Koepl, MPH1, Catherine Fedorenko,
MMSc1, Andy Karnopp, BS1, Chunyu Li, PhD 2,
Ingrid Hall, PhD, MPH2, David Penson, MD, MPH3,
Scott Ramsey MD, PhD11Fred Hutchinson Cancer
Research Center, Seattle, WA 2Centers for
Disease Control and Prevention, Atlanta, GA
3Vanderbilt University medical Center, Nashville,
TN
RESULTS
RESULTS
INTRODUCTION


Table 1 Patient and partner
demographics at baseline

• Survey respondents
• A total of 179 patients and 179 partners
  completed the baseline survey. (Table 1)
• 58 of patient-partner pairs were recruited at
  USC, 24 at MUSC and18 recruited at UTHSCSA for
  the baseline survey.
• 93 patient-partner pairs completed the12-month
  follow-up survey.
• Patient characteristics
• The average patient age was 62.5.
• The majority of patients identified as White
  (75).
• 46 of patients reported full-time employment,
  whereas 32 of patients were retired.
• Patients were well educated with 55 having
  attained at least a college degree (55).
• Patients had few comorbidities, with 69
  reporting 1 other health problem
• Partner characteristics
• The average partner age was 59.1.
• 70 partners self-identified as White.
• Nearly half of all partners reported at least a
  college degree (48).

• Recommended information sources at 12 months
  follow-up
• Partners recommended 4.3 non-physician
  information sources, compared to 3.8 for patients
  at 12 months follow-up.
• The most recommended sources were literature (88
  patients, 93 partners) and friends/family with
  prostate cancer (84 patients, 93 partners).
• The least recommended source for patients and
  partners were internet support groups (25
  patients, 50 partners).
• All information sources were less likely to be
  recommended at 12 months than were found helpful
  at baseline, with the exception of face-to-face
  support groups.
• Table 3 Recommended information sources for
  patients and partners at 12 months follow-up

• Information sources about prostate cancer
  treatment and outcomes are typically designed for
  patients, however little is known about the
  utility of available information for partners.
• We identified the information sources that
  partners of men diagnosed with local stage
  prostate cancer found most helpful and compared
  them to sources used by patients.

Patient () Partner ()
Age of Diagnosis
lt 60 36 49
60-64 24 20
65-69 23 17
70 17 10
Race
White 75 70
Black 12 12
Hispanic 9 8
Asian/Pacific Islander 3 7
Other/Unknown 0 3
Education
High school or less 17 18
Some college 26 34
College graduate 27 32
Graduate degree 28 16
Unknown 2 1
OBJECTIVES

• To evaluate the information sources used by
  partners to understand prostate cancer management
  options and possible treatment-related outcomes.
• To identify the perceived usefulness of
  information reviewed at diagnosis for
  understanding the partner and patient experience
  12-months after diagnosis.
• To determine the utility of specific sources of
  information, defined as whether the partner would
  recommend the information source to family
  members of patients with local stage prostate
  cancer.

Source Recommended at 12 months follow-up N 93 Recommended at 12 months follow-up N 93 Difference (recommended at 12 months useful at baseline) Difference (recommended at 12 months useful at baseline)
Patient Partner Patient Partner
Literature 88 93 -8 0
Friends/family dx 84 93 -11 -2
Internet 75 82 -20 -11
Books 55 62 -41 -30
Media 47 61 -29 -19
Internet support 25 50 -39 -14
Face-to-face support 44 78 0 34
Average recommended sources 3.8 4.3
METHODS
Survey design We conducted a longitudinal,
multi-site study of women with a partner
diagnosed with local stage prostate cancer using
data from the Family And Cancer Therapy Selection
(FACTS) study. Partners in 3 different geographic
regions were surveyed at baseline (after the
patients diagnosis but prior to receiving
therapy), and at 12-months after the patients
diagnosis. Study population Men age ? 40
years diagnosed with local stage prostate cancer
between May 1, 2005 and December 31, 2006 and
their partners were eligible to participate in
this study. Patients who had a prior diagnosis of
prostate cancer, were unable to read English or
had dementia or other mental illness preventing
understanding of written surveys were excluded
from the study. Recruitment Patients with newly
diagnosed prostate cancer were recruited from
academic urology clinics at University of
Southern California (USC), the Medical University
of South Carolina (MUSC) and the University of
Texas Health Sciences San Antonio (UTHSCSA) to
complete a patient baseline survey. Enrolled
patients were asked to identify a family member
willing to participate in the linked partner
study by completing a survey at baseline.
Ninety-three percent of the family members who
completed a caregiver baseline survey were
spouses or partners, hence our analysis focuses
on the partner experience. Survey items The
baseline survey included sociodemographic
characteristics, the number and type of
information sources used in treatment decision
making, treatment options considered and
treatments recommended by the physician, and the
treatment outcomes that may be important to
prostate cancer patients and their partners. The
12-month follow-up survey for patients and
partners assessed the impact of cancer on the
patients life, the treatment-related side
effects and the impact on the patient-partner
relationship, recommended information sources and
the partners role in collecting information on
treatment options. Statistical analysis We
tabulated summary statistics of patient and
partner sociodemographic characteristics and the
number and type of information sources consulted
at the time of the baseline survey. On the
baseline survey, we evaluated the patient-partner
concordance to determine whether patients and
partners both used or both didn't use a specific
information source. Concordance was defined as
whether both the patient and partner found the
source helpful, or both found the source not
helpful. At both baseline and 12-months,
percentages of those who found sources helpful or
recommended sources were out of those who used
the source. Finally, we computed the difference
between what information sources patients and
partners recommended at 12 months in relation to
the information sources they found helpful at
baseline.

• Baseline information sources
• On average, patients used 4.5 information sources
  and partners consulted 4.6 different information
  sources.
• The most common non-physician information sources
  were literature (80 patient and partner) and
  friends or family members diagnosed with prostate
  cancer (78 patients, 80 partners).
• The largest information difference was
  traditional media (newspapers, magazines,
  television or radio), used by 37 of patients and
  47 of partners.

Figure 1 Change in satisfaction with information
sources (recommended at 12 months useful at
baseline)
Table 2 Patient and partner information sources
used and that were helpful at baseline
Information sources used at baseline Information sources used at baseline Information sources used at baseline Helpful information sources at baseline Helpful information sources at baseline Helpful information sources at baseline
Information Source Patient () N 179 Partner () N179 Patient-partner concordance () Patient () N179 Partner () N179 Patient-partner concordance ()
Doctor 99 99 98 98 97 95
Literature 80 80 77 97 92 91
Friends/family dx 78 80 78 96 92 92
Internet 65 65 69 97 90 92
Books 56 58 64 96 87 90
Media 37 47 61 79 75 83
Internet support 23 19 72 78 62 92
Face-to-face support 12 15 82 62 26 50
Average information sources 4.5 4.6 4.2 4.6
CONCLUSIONS

• Patients diagnosed with local stage prostate
  cancer and their partners consulted a similar
  number of information sources on treatment
  options and there was little difference in
  recommendations one year after treatment.
• The largest gap for helpful information sources
  between patients and partners were face-to-face
  support groups (62 of patients and 26 of
  partners found this source helpful).
• Improved information at face-to-face support
  groups may benefit partners and support patients
  during the treatment decision making process.

• Helpful information sources at baseline
• On average, patients found 4.2 information
  sources to be helpful whereas partners found 4.6
  sources to be helpful
• Most partners regarded their information sources
  as useful, with the exception of face-to-face
  support groups (26).
• By comparison, most men found face-to-face
  support groups to be a useful information source
  (62) (See Table 2 above)

FUNDING SOURCE
The Centers for Disease Control and Prevention
and the National Cancer Institute through the
Cancer Prevention and Control Research Network, a
network within the CDC's Prevention Research
Centers Program (Grant 1-U48-DP-000050).