Breast Reconstruction:

women’s information needs.

Lisa Wolf
Clinical Nurse
Specialist
Breast Care
The Royal Marsden
Hospital, Sutton
Breast Reconstruction
Surgical procedure to create
a breast mound.
 Breast Surgery
• all surgery is invasive and carries the
potential risk of side effects
• as individuals women have differing
anxieties and reactions
• clinician’s viewpoints and ideas may not
match those of the patient
• careful assessment of individual needs,
priorities, fears and anxieties is crucial
 Reactions to cancer
• the range of normal is vast
• judging someone’s reaction may make
them feel ignored or isolated
• health care professionals should not be
deciding whether a reaction is normal or
not, but whether it is helping that patient
with that situation, and if it is not, what
can be done to diminish stress
 Reasons why women
decline reconstruction
• it was not offered / not • concerns about
made available ‘masking’ a new cancer
• concerned they will • concerns about
appear vain delaying adjuvant
• feel they are too old treatment
• desire for minimal • do not want a foreign
surgery and faster body
recovery • reluctant to operate on
• not primarily concerned a ‘healthy’ area
with their breast loss • not given enough
• cosmetically information
unacceptable
 Reasons why women choose
breast reconstruction
• practical reasons • to regain a cleavage
(clothing and bras) • to improve self esteem
• to avoid having to wear (femininity)
an external prosthesis • to enhance emotional
• occupation / lifestyle well-being
• personality (assertive • to feel ‘normal’ again
and positive ‘copers’) • sexuality - forming new
• so children don’t see relationships
them ‘deformed’
 Information Needs
• a great source of dissatisfaction and
complaints
• strong relationship between perceived
adequacy of information and overall
satisfaction with care
• information increases compliance,
promotes co-operation, enhances self
esteem and allows patients to feel more
in control
 Health Care Professionals contribute
to unmet information needs:
• lack of time / too busy
• negative mood states (irritable, tired)
• avoiding sensitive subjects (self protection)
• fear of causing more distress
• interruptions (environment)
• inadequate skills / knowledge
• mistaken assumptions
 Audit:
Information given to patients undergoing
breast reconstruction by different
health care professionals.
Emma Pennery, Sheila Small and Lisa Wolf

Research:
The information needs of women who have
undergone breast reconstruction.
Lisa Wolf
Audit Aims and Objectives
• To explore patient’s perceptions of
information provided by different health
care professionals regarding breast
reconstruction.

• To examine patient satisfaction following

breast reconstruction.

• To highlight best practice and to

provide uniformity in the provision of
information about breast reconstruction.
 Audit conclusions
• Women face complex choices at a time
when they may already endure anxiety
related to cancer diagnosis, treatment and
outcome.

• Women place great importance on meeting

or talking to other patients.

• Women require a greater emphasis on long

term effects and specifically ongoing
discomfort.
Audit conclusions cont.
• Emphasis / areas of information covered by
the Consultant & the Clinical Nurse
Specialist (CNS) are different.

• Importance of CNS input is noted – the

most detailed information provider in 7 out
of 12 information categories.

• Overall satisfaction appears high.

 Outcomes
• Checklist of information.
• Process of putting women in contact with
others.
• Emphasis on longer term effects of surgery to
reflect experiences reported.
• Revision of RMH booklet.
• Share findings with MDT.
The information needs of women who
have undergone breast reconstruction.
• Research available to support benefits of
breast reconstruction.
• Scarcity of research about breast
reconstruction information needs.
• Importance of providing information.
• Research shows that women with breast
cancer have high information needs.
 Aims and Objectives
• The information considered relevant prior to
undergoing breast reconstruction.
• The most appropriate timing for information
giving.
• How information should be given.
• The factors that facilitate or impede the
delivery of information.
 Research Design
• Qualitative: focuses on individual
experiences to provide rich descriptions
of previously unexplored phenomena.
• Focus groups.
• Framework analysis.

CCR/REC
Written consent
 Literature Review
• Literature is • Information seeking
available on behaviours of
motivation / reasons women with breast
for choosing / cancer (Rees &
declining Bath 2001).
reconstruction. • QOL after breast
• Profiles of these reconstruction
women. (Nissen et al 2002).
• Patient satisfaction
with outcomes.
 Literature Review cont.
• Information needs of women with breast cancer
(Bilodeau & Degner 1996, Bottomley & Jones
1997, Brown et al 2000, Cawley et al 1990,
Degner et al 1997, Galloway et al 1997, Gray et
al 1998, Graydon et al 1997, Harrison et al 1999,
Harrison-Woermke & Graydon 1993, Luker et al
1996, 1995).
• High information needs which change over time.
• Information sources accessed.
• Preference for verbal information over written.
 Literature Review cont.
No published
research on role of
CNS in information
giving process or
demonstrating how
CNS can most
effectively support
women facing this
option.
 Importance of
information giving
• Political influence from UK government e.g.
Patient’s Charter 1991, Audit Commission 1993,
Calman-Hine 1995, NHS Executive's Patient
Partnership Strategy 1996, Cancer Plan 2000.
• Ethical move from paternalism to patient
autonomy.
• Evidence that cancer patients want to be given
information (Fallowfield et al 1994, Jenkins et al
2000, Jones et al 1999, Meredith et al 1996).
 Cont.
• Women tend to be more active seekers of
information than men (Buodioni et al 1999,
Eysenbach et al 1999, Manfredi et al 1993, Meric
et al 2002).
• Information giving is an essential and
fundamental component of nursing care.
• Information can reduce anxiety and increase
ability to cope.
• ‘Common sense.’ that knowledge about
information needs can only come from these
women themselves.
 Findings
• Index: 145 themes Decision-making
• 5 main categories Sources of information
• All main categories (apart from surgeon
divided into sub- and CNS)
themes The surgeon and CNS
as sources of
information
Information giving
Content of information
 Decision-making
about mastectomy

• decision to have a mastectomy

• seeking other options to avoid
mastectomy
• seeking 2nd / 3rd opinion about
mastectomy
 Decision-making
about reconstruction

• decision to have reconstruction

• timing: immediate or delayed
• seeking 2nd opinion
• decision-making about options
• time to make decision
 Sources of Information
• photographs
• contact with other patients
• booklets / written information
• internet
• tape of consultation
• information video
 Surgeon
• attitude and manner
• time spent with surgeon
• access to surgeon
• contact with surgeon after reconstruction
• faith in surgeon
• comparisons between surgeons
• junior surgeons
• use of nurse by surgeon
 Clinical Nurse Specialist
• role: support, reassurance, information,
advice, advocate, liaison,
communication, continuity
• accessibility
• attributes: knowledge, empathy, honest
• frequency of contact
• time given
 Content of information
• length of process • nipple removal
• cosmetic outcomes • bras and swimwear
• sensation • massage
• recovery time • follow-up and
• pain and discomfort mammograms
• complications • post-operative
• implants information
• psychological
preparation
Information giving: process
• timing
• spread over a period of time / staggered
• limited vs. detailed
• individualised
• repetition
Information giving: delivery
• difference between surgeon and nurse
• role and presence of nurse
• written questions
• bringing someone with
• manner of delivery: honesty, kindness
 Information giving: patient
• effect of emotional state
• feeling overwhelmed
• fear of information
• wanting to only hear positive information
• ability to retain details, memory loss
• ability to ask questions / not wanting to
appear ‘stupid’
• information overload
 Examples of quotes
• Photographs

…I think you look too much at what these

models do where they have, you know,
enlargements and I think that if I hadn’t seen
photos I would have thought that I was going
to end up looking more natural.
• Surgeon

My consultant was really fantastic and I felt that

he was interested in me and that I was an
individual and he was interested in the
cosmetic look of it, far more interested than I
was, actually. And I felt that he knew me and
that he knew my disease and he was just
fantastic...
• Surgeon

He is a great surgeon but he does not take

enough time. He can gloss over loads of stuff.
He is up out of his chair, out of the door
sometimes saying “any questions?”, and he is
already out of the door.
• Information giving: patient factors

It is interesting though, you see, I must have

read it at least twice at the time but I can’t
remember it at all.

I am a bit foggy about what I was told.

• Content of information: length of process

I think the first thing that you should be told is

that it is never over, that when you take a
decision, it just sparks off a whole series of
other things.

Not a quick fix, but like doing a marathon...

• Content of information: cosmetic outcomes

I thought it was just like having a boob job, I had

no idea I was not going to have a nipple
afterwards.
 Discussion
Examples of issues:
• Differences in views and opinions about decision-
making between NHS and PP e.g. reaction to
photographs and audiotape of consultation.
• Wanting CNS present at every consultation.
• Variation in timing when they wanted information
/ timing when they felt ready to receive
information was highly individualistic.
• Attitude of surgeon served as barrier to receiving
information.
 Cont.
• NHS patients dissatisfied with ‘limited’ access to
consultant.
• Information about pain and longer term
discomfort, lack of sensation, length of process
and associated with complications - role of HCPs
? not wanting to discourage women from
undergoing a procedure that ultimately may
result in improvements in well-being.
• Follow-up: dramatic change from being seen
regularly - less supported and reassured.
 Implications
Examples:
• Recommendations would have repercussions on
work-load and resources which may not be
feasible within NHS resources.
• Ideas about photographs, video, booklet, use of
volunteers.
• Explore to what extent women are prepared to go
to achieve an ‘acceptable’ cosmetic result within
limitations of what can realistically be offered /
achieved.
 Cont.
• Assessment of individual need for information
which is an ongoing process.
• Finding information overwhelming and role of
‘staggering and drip-feeding’ information.
• Limited ability to recall information.
• Reference guide for those who impart information
e.g.checklist.
• Give realistic picture about what reconstruction
can achieve vs. idealistic image.
• Feedback to team.
The Role of the Nurse

Information and support

 Information Essential to
Preoperative Preparation
• surgical technique and scars
• symmetry, size, position and height
• implants and silicone
• nipple reconstruction and replacement options
• short term complications: hardness, swelling,
bruising, seromas, infection
• longer term complications: infection, rupture, capsular
contraction, deflation, necrosis, wrinkling
 Information Essential to
Preoperative Preparation
• sensation, numbness
• pain (including phantom)
• post-op care (drains, ITU, PCA, sutures etc)
• further surgery [reduction, augmentation, port
removal, implant change, scar revision]
• photos [expectations]
• follow-up care [bras, massage, partial prosthesis]
• emotional recovery [grief, loss, showing others,
coping]
 Support
• acknowledge worries & respond to prompts
• listen without necessarily offering advice
• assess motives, expectations and knowledge
• explanations (appropriate language, avoid
terminology)
• sensitivity
• individualised preparation is paramount to
effectiveness
 Reconstruction...
• Creates the illusion / mimic of a breast
and cleavage but is never as good as
the ‘real thing’.
• For some women the scars of
reconstruction may be worse to them
than those of a mastectomy - there is no
such thing as a ‘scar-less’
reconstruction.
 Reconstruction...
• May distract from loss of a breast.
• Focuses on recovery phase.
• Loss of breast and nipple sensation.
• Is a cosmetic procedure and should
never be to the detriment of the cancer
treatment.
• Is not for everyone.