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ABSTRACT
Interest in measuring patient-reported
outcomes has been growing within cancer
care facilities. In particular, communi-
ty-based agencies want to identify appro-
priate patient-reported outcomes to use in
evaluating their programs. Willow Breast
Cancer Support Canada undertook a
series of interviews with sta, peer volun-
teers and clients to identify the most rele-
vant patient-reported outcomes for their
telephone peer support service. Both pro-
cess and outcome variables were identied
as relevant for future measurement. The
approach utilized and the outcomes identi-
ed could serve as a model for similar orga-
nizations to implement.
Cancer and its treatment have signif-
icant emotional, psychosocial, spir-
itual, and practical consequences for
individuals (Fitch, Porter, & Page, 2008).
Having relevant, meaningful informa-
tion and support has been cited by can-
cer survivors as critically important in
helping them cope with these conse-
quences (Fitch, Porter, & Page, 2008).
In particular, peer support is seen as a
key source of relevant information and
emotional support for breast cancer sur-
vivors (Fitch, Nicoll, & Keller-Olaman,
2007; Raupach & Hiller, 2002).
Willow Breast Cancer Support
Canada is a pan-Canadian service
designed to provide peer support and
information to individuals experiencing
breast cancer-related concerns. The pri-
mary mode of peer support delivery is
via telephone with trained peer support
sta and volunteers. These individuals
respond to concerns across the cancer
journey from pre-diagnosis to diagno-
sis and treatment, through follow-up
survivorship care and/or palliative care.
In operation since 1994, Willow’s vision
is that all people in Canada aected by
breast cancer will have timely access to
unbiased information and compassion-
ate support.
There is growing interest on the
part of cancer care agencies to evalu-
ate whether they are delivering services
as planned and achieving anticipated
patient results. Patient-reported out-
comes (PROs), conceptualized as
changes in an individual’s health sta-
tus or condition, are seen as important
in answering these questions (Given &
Sherwood, 2005). Willow Breast Cancer
Support Canada undertook a project to
identify the most relevant patient-re-
ported outcomes for its telephone-based
peer support service. This unique initia-
tive for community-based, sta/volun-
teer-delivered support could be a model
for other community cancer support
services.
BACKGROUND
Willow’s Peer Support Telephone
Service
Willow’s peer support telephone ser-
vice is open to all callers with a breast
health concern. Each call is answered
by a Willow sta member or a trained
volunteer, all of whom are breast can-
cer survivors. The support team works
together with a professional librarian
oering an integrated service whereby
clients can access verbal or written
information via e-mail or regular mail.
On average, the service responds to 60
calls per month (not including email
requests) and the calls last between ve
and 60 minutes.
During a call, the Willow sta mem-
ber or volunteer begins by seeking to
understand the reason for the call and
the caller’s specic situation. Based on
the individual’s need, the sta member
or volunteer might share their own per-
spective about their experiences (e.g.,
diagnosis, side eects, follow-up care,
coping strategies, practical suggestions
and tips on interacting with health care
professionals), or share information
about breast health/cancer (not medical
advice).
If the sta member or volunteer is
not equipped to address the informa-
tion a caller requests, they may refer
the caller to another individual within
the organization (i.e., librarian, another
volunteer with a more similar experi-
ence to that of the caller), to another
organization (e.g., Wellspring, Gilda’s,
Canadian Cancer Society) or resources
on the Internet (e.g., websites and
online communities). Sta and volun-
teers are expected to understand and
assess client concerns from the per-
spective of the caller and balance giv-
ing emotional support versus providing
information based on the caller’s needs.
Program Evaluation Measurement
Historically, measurement in health
services program evaluation focused
primarily on structure and process met-
rics or indicators, with some attention
to client satisfaction. More recently,
patient-reported outcomes (PROs) are
increasingly utilized as an important
means of using standardized measures
to capture the patient’s perspective. The
most commonly recorded PROs clin-
ically are physical indicators (i.e., pain,
nausea, fatigue, etc.) although record-
ing of psychosocial PROs (i.e., anxi-
ety, depression, etc.) is occurring with
greater frequency. During the past
decade, cancer centres have started
using PRO tools to measure and track
Identifying patient-reported outcomes of
telephone-based breast cancer support services
by Margaret I. Fitch, Kittie Pang, and Danielle VandeZande
ABOUT THE AUTHORS
Margaret I. Fitch, RN, PhD,
Professor, Bloomberg Faculty of
Nursing, University of Toronto,
Toronto, ON
Marg.i.fi[email protected]
Kittie Pang, BSc(Hons), Research
Coordinator, Sunnybrook Health
Sciences Centre, Toronto, ON
[email protected]
Danielle VandeZande, Senior
Manager, Support Services and
Community Engagement, Canadian
Breast Cancer Foundation, Toronto,
ON
[email protected]

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psychosocial and symptom distress
with a view to stimulating person-cen-
tred cancer care delivery (Canadian
Partnership Against Cancer, 2009).
Community-based centres are now
seeking to identify the PROs best suited
for program evaluation within their
realm of care delivery. Community-
based centres may have programs deliv-
ered by health care professionals or by
trained volunteers and PROs need to
be identied that are appropriate for
each type of delivery. Outcomes ought
to be identied in relation to the spec-
ied objectives for the programs, the
expected end result, the resources avail-
able, and the mode of delivery. To date,
PROs for volunteer/peer-based tele-
phone support/information services
have not been reported.
PURPOSE AND OBJECTIVES
Ultimately, the agency wanted to
monitor its peer support telephone
service on a regular basis. However,
prior to implementing a data collection
approach, the most relevant variables to
measure for the specic service needed
to be identied. The work reported in
this article was conducted to identify the
relevant PROs for a peer-provided, tele-
phone-based information and support
service related to breast cancer.
METHODS
Using a descriptive qualitative meth-
odology (Thorne, 2007), we sought to
understand current experiences with
the Willow peer support telephone ser-
vice to help isolate relevant outcomes
for the service. In-depth interviews were
conducted with sta, trained volunteers,
and individuals or clients who had used
the service. Understanding the program
delivery experiences of the sta, volun-
teers, and callers identied the results
achieved through this particular mode
of delivery. Approval was obtained from
Sunnybrook Health Sciences Centre
Research Ethics Board.
Recruitment: The agency’s sta mem-
bers assisted in the project design and
implementation. Their participation
included one interview about their
experiences responding to the Willow
callers.
The executive director of the agency
sent an invitation letter to the peer sup-
port volunteers. The research assistant
followed up with the volunteers to explain
the study, answer any questions they had,
and seek their consent to participate. If
they agreed, the research assistant orga-
nized a convenient time to conduct an
interview either in person or over the
telephone. The sta and volunteer inter-
views were completed and analyzed prior
to conducting the client interviews.
Client recruitment occurred by
Willow sta at the end of a telephone
call. All clients were considered eligible
for invitation to participate unless, in
the view of the sta member who had
handled the call, the request would be
inappropriate because of the caller’s
level of distress, English comprehension,
or they had already been approached to
participate. Two sta members were
involved with all of the calls during the
data collection period. The client was
informed the study was being con-
ducted to understand the client’s experi-
ences with the service. For those who
were interested in learning more about
the study, their name and contact infor-
mation was recorded with their permis-
sion and shared with the research assist-
ant. The research assistant contacted the
client to explain the study fully, respond
to any questions, and seek consent for
one interview. If the client caller agreed,
arrangements were made to conduct the
interview over the telephone.
Interview guide: A semi-structured
interview guide was designed by the
investigators and Willow sta mem-
bers for the purposes of this study. The
interviews provided an opportunity for
the participants to describe their per-
spectives about the telephone service:
how it operates, what happens during
a telephone call, and outcomes of the
interaction. All interviews were con-
ducted by the same individual (research
assistant) who had qualitative inter-
view experience and was not part of
the organizational sta. Each interview
was audio recorded and transcribed
verbatim.
Analysis: The sta/volunteer interviews
were analyzed prior to conducting the
client caller interviews. In all cases, the
verbatim transcripts were subjected to
a standard qualitative descriptive con-
tent analysis (Thorne, 2007) by two indi-
viduals (PI and RA) experienced in this
type of analysis. Interview transcripts
were reviewed independently and mar-
ginal notes made about the observed
content. Subsequently, perspectives
about the content were shared through
discussion, similar ideas grouped, and
key ideas isolated within the catego-
rized content. Final results were sum-
marized by the PI. Ultimately, common
perspectives across all three groups of
interviewees (sta, volunteers, clients)
were drawn together to reect the over-
all ideas about the relevant patient out-
comes for the telephone-based peer
support service.
RESULTS
Perspectives from Sta Members and
Volunteers
Six sta members and four volun-
teers were interviewed. The participants
were all female and ranged in age from
35 to 78 years (average 55.1 years). They
had between one and 18 years of service
(average 7.85 years) with Willow (See
Table 1). Both sta members and vol-
unteers expressed very similar ideas,
experiences, and perspectives about the
Willow telephone service. The results
will be presented for the 10 sta and
volunteer interviewees together, with
notable dierences in perspectives
highlighted.
Reasons callers contacted Willow
Willow is seen as responding to
needs for information and support for
Table 1: Sta/volunteers demographics
(n = 10)
Gender 100% Female
Age Average = 55.1 yrs.
Range = 35 to 78 yrs.
Education 70% Post-Secondary
30% Post Graduate
Current Role 60% = Sta
40% = Volunteers
Years of
Service
Average = 7.85 yrs.
Range = 1 to 18 yrs.

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all callers, regardless whether the caller
was a patient, survivor, family member,
friend, member of the general public,
or healthcare professional. In the words
of one interviewee, “It is really a service
for everyone with an interest in breast
cancer.” The service is seen as provid-
ing trustworthy, credible information
either through telephone conversations
or via written material sent by mail or
electronically. It provides a trained indi-
vidual who has been through the same
situation and who can “…listen to the
whole person”. Conversations are pri-
vate and personal, and can be held in
complete anonymity if the caller wishes.
The sta/volunteer participants
described a wide range of reasons why
clients contact Willow. The clients will
often start a conversation by identify-
ing one type of request as their reason
for calling, but the conversation often
evolves to include other emotional or
information issues. They could be cry-
ing and expressing a sense of panic at
the onset of the call or have a specic
question they want to ask.
• [we get] all kinds of calls… people
who are looking for information
about nancial support, women who
just want you to listen, women who
are really depressed, women who do
not know what to do next or what
to expect, or women who are angry.
It can be husbands of those kinds of
women, or grown children of these
women. It can be anything that’s
related to breast cancer in anyway
or… even people who didn’t even
have breast cancer, but they knew
Willow was a reputable source and
they just wanted a link, or to be
aware of links in their community.
In many instances, as the calls pro-
ceed, discussions will incorporate
aspects of both support and informa-
tion. A call motivated by the need for
emotional support will evolve into shar-
ing of information or vice versa. It can
be dicult to separate the support and
informational needs addressed during
the call, given the interwoven nature of
the conversations.
• …somebody will phone in that they
want to know where to buy a wig…
but there’s another layer beneath
that to get to. The wig is sort of an
excuse to call… and every phone call
that you take is new… need to lis-
ten to what is being said, the tone of
voice… it is easier sometimes if you
are with someone one-to-one to rec-
ognize where they are in terms of
fear, grief, joy… but to recognize it
on the phone and you can respond to
it… that’s another skill.
• Every call is dierent… most from
those who are newly diagnosed
where the predominant theme
is fear, how to manage that fear,
explaining, sort of the navigational
piece, what they can expect in terms
of seeing a surgeon, and the possibil-
ity of chemotherapy and radiation
therapy, what the treatments are
designed to do, which is to reduce the
risk of recurrence.
The majority of the calls are from
women who have been diagnosed with
breast cancer and are facing treatment
decisions or are receiving treatment,
or from their family members on their
behalf.
• It is helpful to women to hear it
from someone who has been through
it… there is so much anxiety when
you are rst diagnosed. And to speak
to someone who understands how
anxious you are, well, it kind of val-
idates their emotions. Normalizes
them; to know you’re not going
insane if you cry and then all of a
sudden you feel brave. And the next
second you are crying again. Then
you are angry… fearful… Willow
oers a shared experience and the
ability to provide information.
Experiences with calls (focus and
process during calls)
Willow sta/volunteers described
the process during the calls of listen-
ing carefully, letting the caller identify
what they wanted to discuss, and try-
ing to respond in a supportive and com-
passionate manner. They often recalled
their own experience and what they
found helpful at the time of their origi-
nal diagnosis and try to incorporate this
into their calls.
• A lot comes up in the calls about
the women feeling a lack of control
of their lives… waiting to hear back
from doctor’s oces… dealing with a
sense of isolation… you need to know
that is part of the journey… and take
people back to that normal thing, to
help them manage.
During the course of any one call,
there can be a range of topics discussed.
The sta/volunteers answering the calls
try to respond to the needs of the callers,
but are not entirely certain what direc-
tion a particular call may take at the
onset. They need to be prepared to fol-
low the lead of the caller.
• People call and sometimes they get
into what is critical right away and
to what is really bothering them.
But most of the time, there’s a back-
ground reason for the call and you
sort of have to arm what they’re
feeling… you listen to what they are
sharing and mirror it back… there’s
rarely a call that doesn’t have a layer
to it… and you might have to work
through things to get to it… and
there can be lots of needs beyond the
breast cancer experience.
The discussions during the calls may
include physical, psychosocial, spiri-
tual, and practical topics, as well as the
disease and treatment-related issues.
Examples of physical topics include
dealing with side eects, medications,
menopause, genetics, and surgery/
reconstruction. Psychosocial topics
can include dealing with fear, worries,
anger, frustration, grief, and anxiety.
Spiritual topics may cover aspects of iso-
lation, feeling alone, and joy. Practical
topic examples are dealing with
nances, navigating the cancer care sys-
tem, or nding services (e.g., wigs, pros-
theses). Interviewees emphasized that
no medical advice is given to callers; cli-
ent callers are encouraged to ask medi-
cal questions of their family physician,
oncologist or cancer nurse. Callers often
look for a dierent type of conversa-
tion than the ones they would have with
health care professionals.
• …Just simply talking to some-
body who is quote, ‘an expert on it
because they have been through it’,
it oers a sense of reassurance…you
can ask a professional these ques-
tions, but I mean, rst of all, they

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may be too busy to talk to you…or
maybe you feel embarrassed to ask
the question…it’s a bit embarrassing
to say, ‘Well, actually, I am really
feeling depressed and lonely; I’m
afraid nobody will love me if I have
no breasts…you feel you can per-
haps talk to another woman about
it, that’s because it’s something she
would understand.
Outcomes of calls/interactions
Willow sta/volunteer interview-
ees identied a range of both pro-
cess and outcomes for the telephone
exchanges. They described what ought
to be achieved during the process of the
call itself (i.e., what should the Willow
sta/volunteer be trying to do during
the interaction), as well as the end result
of the interaction (end result of the call
or what the caller ought to be feeling/
thinking/behaving at the nish). These
ideas expressed are outlined in Table 2.
For the most part, the sta/volun-
teers focused their reections about
outcomes on psychosocial variables.
Reducing distress was cited as a primary
end result of the telephone exchange.
Satisfying the need for information
could contribute to reducing the distress
felt by the caller, but often the Willow
sta/volunteer interviewees thought the
manner in which the call was handled
was a key factor in achieving the out-
come for the person who called.
• I hope their questions are
answered. If there is a factual thing
they want to know, I am looking
to meet that need… to have them
internally be saying, ‘yes, OK, that
makes sense, that’s the information I
needed.’ I am looking for them to be
able to feel that, you know, just emo-
tionally satised that they’ve been
understood and their need, whatever
that need was… for empathy, the
need for this sort of sense of being, of
being supported… I hope that’s what
they come away with.
• I hope that women… just feel some-
what more comfortable in being
able to make a decision about what
they’re going to do… that they’ll have
the information that… allows them
to move forward… in dealing with
the whole problem.
• That women have the ability to
speak, tell their story… to feel they
can open up and tell us about their
concerns. And to call back if they feel
down or have another concern… and
we will listen.
• We can help them tap into their
own reserves, maybe they didn’t even
know they had, and help to put them
on a path that they can have their
needs attended to… navigating them
a little.
Perspectives from Client Callers
During the three weeks of data col-
lection, 59 peer support telephone calls
were handled by Willow sta and 38
client callers were invited to participate
in the project. Of the 30 names given to
the RA, 20 individuals were contacted
within 15 days of their call to Willow
and all agreed to participate. Interviews
were conducted by telephone and
lasted between 10 and 40 minutes.
All but one of the 20 clients inter-
viewed were female and 16 had been
diagnosed with breast cancer. The one
male was a family member. The cli-
ent callers ranged in age from 29 to
71 years (average 54.2 years). Of those
who had breast cancer, the diagno-
sis occurred between one and 18 years
ago (average 2.8 years). Eleven of the
client callers were married. Seven had
completed high school and another
seven had completed university. Fifty-
ve percent (55%) lived in the Greater
Toronto Area, while an additional 45%
lived in other parts of Canada (See
Table 3).
Table 2: Outcomes identified by Willow sta/volunteer interviewees
Outcomes Achieved
During
telephone
interaction
(how interaction
ought to be
handled or
conducted)
•Listen and mirror back (reflection)
•Freedom to ask questions
•Allow to go to a deeper level
•Provide a place where they can ‘check-in’
•Provide a space where they can connect/link; connect them with
services; refer them to other agencies based on need/questions
•Create comfort so they feel they can call back
•Release emotions
•Support them in decision-making
•Provide encouragement
•Meeting people where they are – let them define their needs
•Allow to talk and be heard by another
•Talk with someone who understands what they are going through; talk
with someone who was there (went through the same thing)
•Provide tailored information and support
•Identify questions they can ask their doctor
•Clarify information (facts)
At end of
telephone
interaction (what
the call ought to
achieve)
•Validate (experiences are real)
•Normalize (feelings are normal/ not going crazy)
•Make it easier for them [to cope/manage]
•Received relevant, meaningful, understandable, up-to-date
information
•Decreased sense of hopelessness; feel hope
•Help them help themselves (empower)
•Feel more in control
•Feel a sense of community, being supported, meaning; feel a sense of
shared experience
•Decrease anxiety; less dread; feel a sense of relief
•Feel they can move on
•Have information to enable better decision-making
•Feel reassured

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Reasons for calling
The callers described their initial rea-
son for calling Willow as either the need
for support or the need for information.
They described the need for support, at
any point along the continuum of the
breast cancer journey, as wanting to
talk to another woman who had experi-
enced the same things or who had gone
through the same situation as them-
selves. They described feeling ‘stunned’
by the breast cancer diagnosis, whether
a new or a recurrent one, and being
‘thrown’ by learning of its existence.
Feeling worried, scared, fearful or ’in a
panic’ were cited frequently as the moti-
vation to call Willow.
• I was panicking because I was
afraid that I had a recurrence, and
she [sta member] had a very calm-
ing eect on me.
• I called for support. I was having
one of those worry days where I just
really felt sort of fearful and I didn’t
want to reach out to friends or fam-
ily. I did not want to worry them.
• I was scared and I was confused
and I had all kinds of questions and
I was angry.
In terms of the need for information,
client callers described a wide range of
topics they wanted to know about (e.g.,
treatments, reconstruction, what to
expect when they went to the hospital
or cancer clinic, clarication about ter-
minology, “checking out what I heard
at the clinic, what my doctor told me”).
However, many called looking for both
support and information.
• I called for both information and
support…I was going through treat-
ment, you know, and wanted to
know what to expect, their experi-
ences, just feeling out the unknown
and what to expect.
• I called for both support and infor-
mation…I was stunned. A lot of
words had been thrown at me…I
needed someone to explain those
words. I did not have a good under-
standing…I needed someone to help
me sort things out.
Callers emphasized that, although
their calls had been made regarding a
need for either support or information,
the conversations often evolved to incor-
porate both needs. Giving support often
included the provision of information
while the discussion of information fre-
quently included responses to emotional
concerns. Caller felt the interactions often
covered a number of topics and fullled
both information and support needs.
• I asked a lot of questions and
they were able to answer them. So
it worked quite well…it started out
being purely informational but I
think it became supportive as we
chatted…we talked about the ram-
ications of reconstruction and
what the surgery involved and what
the recovery time involved, the pros
and cons I suppose of having it and
why, I guess, I would have it…I felt
very positive, and felt they had laid
the information out very clearly and
honestly, and I felt better after it.
Experience with calls (focus and process
during calls)
Clients characterized their calls as
being answered promptly and not hav-
ing to “…wait on hold.” If the rst person
to answer was not able to respond to
their specic request, another individ-
ual was brought onto the call quickly
or arrangements were made for some-
one to return the call in a short time
period. They described their experience
during the telephone call as being ‘lis-
tened to with compassion and under-
standing’. They found the Willow sta/
volunteer answering the call was sup-
portive, calm and respectful, listened to
their concerns and “…not judging me.”
The exchange included being able to
talk about their concerns, as well as hear
about the experiences of other individu-
als who had been diagnosed with breast
cancer. They did not feel rushed or pres-
sured by the Willow sta/volunteer to
nish the conversation. They found the
Willow sta/volunteer was eager to help
them and work through their concerns
with them. In the words of one client
caller, “I felt like I had all the time in the
world to talk with her.”
• It was a place where people really
understood what you were going
through, because they had been
through it themselves, and they were
able to talk to you on your level…
They just put things into a, well,
into a perspective that put your
mind at ease, as much as could be at
that point.
• …But they listened and were able
to help me consider dierent factors,
you know, as I had to make a deci-
sion. No one can make the decision
for me. But they were supportive
in helping me make the decision…
compassionate.
• …they were courteous and respect-
ful. And, also, tried to be as objec-
tive as possible. The person shared
her own experience and tried not to
inuence me in anyway, just tried
to provide whatever information she
could… she had a lot of understand-
ing on the subject…
• They were understanding, and you
know they were helpful. They let you
talk, they listen, you know, providing
good inputs, suggestions. You know,
overall I think it was great… it was
an equal conversation… it wasn’t all
one-sided… they didn’t rush you o,
you know.
Table 3: Client demographics (n = 20)
Gender 95 % Female (n=19)
5 % Male (n = 1)
Age Average = 54.2 yrs.
Range = 29 to 71 yrs.
Location 9 = Toronto
2 = London
1 = Ajax, Hamilton,
Huntsville, Kingsville,
Montreal (QC), Ottawa,
Richmond Hill, Thornhill,
Tofield (AB)
Education
Level
30 % Some post-
secondary (n=7)
35% Post-secondary (n=7)
35% Post Graduate (n=7)
Diagnoses 80% Diagnosed with
Breast Cancer (n=16)
20% Not Diagnosed with
Breast Cancer (n=4)
Year Since
Diagnoses
Average = 2.8 yrs.
Range = 1 to 15 yrs.
Marital
Status
53% Married (n=10/19)
37% Single (n = 7/19)
5% Common Law (n = 1/19)
5% Separated (n=1/19)