The Patient`s Voice and What We Do With What They Say

2/3/2014
Bottom line first
Creating opportunities (and an environment) for
individuals with cancer to fully express themselves
regarding healthcare issues and participate fully in
their own healthcare
The Patient's Voice and What
We Do with What They Say
Donna L. Berry, PhD, RN, AOCN, FAAN
PSONS Symposium
February 21st, 2014
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The Best Intervention
The case of cancer-related fatigue
o
Mrs. Lee, a 52 year old mother of two teenagers, has just completed
autologous stem cell transplant to treat her diagnosis of nonHodgkin's lymphoma. She is seen by her nurse in the DFCI
lymphoma clinic for a 30 day follow up and is describing serious
fatigue. She wakes up every morning already tired, is unable to carry
out tasks around the house and feels that she sits on her couch for
most hours of the day.
What should you recommend?
o How will you know if it works?
o
o
The best intervention for a patient-reported issue or concern is based
on scientifically-sound research, your patient’s particular needs and
preferences, and the feasibility of that intervention in your practice.
o
The result of putting this all together with your own expertise is an
essential component of oncology nursing practice and patient care
excellence.
o
Professional groups and experts have called this “evidence-based
practice.”
And so….what next?
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Why is EBP important for oncology nurses
to use in clinical practice?
o
o
Getting started
To use clinical expertise with best practice evidence for competent
knowledge, skills, and abilities in delivering quality and safe patient
care.
What exactly is the issue
and how do we want it to
be different?
To eliminate time and money wasters
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Back to your patient’s fatigue
Clinical
Question
Do we have a
policy/pathway?
Is there evidence
to guide a practice
change?
Goals of EBP, QI & Research:
Understanding the difference
o
Evidence Based Practice
o Integrate the best available scientific evidence into practice to
improve patient outcomes.
o
Quality Improvement (QI)
o Develop institutional systems and processes to improve outcomes.
o
Research
o Investigate and develop new scientific knowledge to improve
outcomes.
No
Yes
How can we
improve or
adhere to the
policy?
How to
improve cancer
-related
fatigue?
Quality
Improvement
Generate new
knowledge
EBP
No
Research
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Using Science to Guide Clinical
Practice
• Assure existing patient care routines
are safe and effective
• Eliminate practice routines which do not
enhance patient care in terms of
outcomes or safety
• Adopt well-tested, new interventions in
order to provide the best possible care
BUT….
• A minority of nurses and health care professionals
actively engage in, or study application of, Evidence
Based Practice
 Only 21% of 1200 nurses had implemented evidence from a
research study in the last 6 months (Bostrom & Suter, 1993)
 About 33% of the time, health care providers do not follow
practice guidelines or best evidence (Cretin et al., 2001)
 It takes about 17 years for a robust clinical trial finding to
become standard of care (Balas & Boren, 2000)
 Despite focus on EBP over the last decade, Evensen et al.
(2010) reported that the number of implementation trials has
not increased for evidence-based medical interventions
 EBP is valued but not consistently implemented (Melnyk et
al, 2012)
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Barriers
The Disconnect
• High value for individual decisions and
practice
• Health services and care factors




• No easy answers
• No “bridging the
gap”
Poor administration/management
Sociodemographic factors
Staff skills
Patient’s environment
Hudson, 2008; Nay, 2007
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 Scrap the gap
 If we bridge it, the
gap stays there.
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Examples from Oncology
Examples from Oncology
• At the SCCA, a pan-alliance committee of
nurses tackled problems associated with
discharge medications in the transition from
inpatient to ambulatory care (Berry et al., 2014)
• Borneman et al. (2010) at City of Hope
evaluated implementation of NCCN
Guideline-based, pain & fatigue
intervention: “Passport to Comfort.”
 Educational and system changes
 187 patients with scores > 4/10
 Significant improvements in outcomes;
sustained for 3 months
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 Pre-post test of an intervention including a postdischarge, follow up RN phone call plus written
instructions.
 Significant improvement in adults with regard to
self-reported medication names, doses,
frequencies and routes of administration and
purposes.
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Examples from Oncology
SPAWNing
Oral chemotherapy adherence
 Sommers et al. (2011) evaluated the feasibility of
using multi-professional education, a nurse-led
follow up telephone call and use of medication
diaries to enhance patients’ self-reported
medication adherence and knowledge of oral
chemotherapy
 At the end of the first cycle of therapy, MMAS-8
adherence scores were high in the 30 participants,
mean of 7.89 (SD=.55).
 Seventeen participants documented side-effects
within the first 72 hours of initiation of treatment;
with 8 participants needing further assistance with
management of the side-effects.
Science and Practice Aligned Within Nursing
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A bidirectional process through which
not only existing evidence is applied to
practice; but also, important research
questions are generated for study and
outcomes improvement
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SPAWN Group
The PICO (T) question
• Derived directly from your practice
Create the project team
 Typically a subset of the SPAWNing group
• Champion(s) – lead & contact
• Target(s) – direct care clinician
• Sponsor – decision maker who can provide
resources (e.g., release time)
• Facilitator – advanced practice/researcher
with knowledge of methods





P = patient population
I = intervention or area of interest
C = comparison intervention or group
O = outcome
T = time
Melnyk, et al 2009
Kitson et al., 2008
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The PICOT question in oncology
Population
Intervene
Compare
Outcome
Time
Adults on oral
chemo
F/U
educational
phone call
Clinic only
teaching
Adherence
Initial 3
months
Patients at
risk for
mucositis
Systematic
oral care
protocol
Rx solution
only
Mucositis
severity
Find the strongest evidence
Author &
year/
Level of
Evidence
Design &
groups
Sample
Adamson,
2009
RCT
Exercise v.
relaxation
v.
massage
N=269
mixed
dx
Intervention
Results
Conclusions
Limitations
Europe
Acute care
period
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To implement or not?
Critically appraise the evidence
• Are the methods of studies believable;
is there sufficient information to tell?
• What are the results? Are they
meaningful and reliable—if applied,
might I get the same results;
• Are the findings clinically relevant to my
patients?
Fineout, Melnyk, et al 2005
• Addressing the sufficiency of the
evidence
 Consider institutional priorities
• Formularies do this often
 Consider individual preferences
• If implemented, careful process
Fineout, Melnyk, et al 2005
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Evaluate the outcomes of
implementation
Implementation
•
•
•
•
•
• Measure and monitor in one’s own
setting
Define process and variables
Define stakeholders and communicate
Begin small and simple
Measures planned
Unit coordinators
Rosswarm, 1999
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 Panels of patients
 Access already collected databases
 Create new outcome measures
Fineout, Melnyk, et al 2005
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2/3/2014
Diving deeper into the evidence
• Pharmacologic
1. Fatigue
2. Anorexia
3. Medication adherence
4. Decisional conflict
• Methylphenidate, a sympathomimetic
psychostimulant, has shown efficacy in two
trials
• Modafinil, one trial in cancer, only effective in
patients with severe fatigue. Positive trial in
HIV/AIDS
• Bupropion, a norepinephrine dopamine
reuptake inhibitor, two positive trials.
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Where’s the E? - Fatigue
One systematic review (Minton, 2010)
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Where’s the E? - Fatigue
• Pharmacologic
• Erythropoeitin
– Positive effect of anemic patients; side effect concerns
(cardiovascular safety and reduced disease control)
preclude its use for fatigue
One systematic review (Minton, 2010)
Where’s the E? - Fatigue
Psychosocial Interventions show promise
• Cognitive behavioral therapy, supportive-expressive therapy,
behavioral therapy, counseling, educational training, and
restorative training
– Mixed results
Exercise studies predominately positive
• Exercise with aerobic and strength training components was
found to be more effective in reducing CRF than aerobic
exercise alone
• Supervised exercise was found to be more effective than homebased exercise
• Cochrane review concluded that aerobic exercise can be
regarded as beneficial for individuals with cancer-related fatigue
during and post-cancer therapy, specifically in solid tumors. -
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(Meta-analyses (Jacobsen, 2007; Kanga, 2008; Cramp, 2012)
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Where’s the E? - Anorexia
Where’s the E? - Anorexia
• Pharmacologic
• Non-Pharmacologic
 Evidence suggests that dietary advice (nutrition counseling,
with or without oral nutritional supplements, may improve
weight, body composition and grip strength…. no evidence
of benefit of dietary advice or oral nutritional supplements
given alone or in combination on survival.
 The better the nutritional status, the higher the self-reported
quality of life.
 The question remains how to get to “better nutritional status”
 Megestrol acetate
• Increases appetite and small weight gain
• increased risk of blood clots, fluid retention resulting in
swelling of the feet or hands
 Neutroceuticals
• oral fish oils that contain the omega-3 fatty acid
eicosapentaenoic acid (or EPA) to stabilize weight loss
and promote weight gain
• No conclusive evidence
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Cochrane reviews (Dewey, 2007; Ruiz Garcia; 2013)
Where’s the E? – Medication
Adherence
Where’s the E? – Medication
Adherence
• Discharge teaching
• Psycho-educational strategies are
effective
• Determine patients’ and caregivers’
understanding of discharge medication
regimens following a hospital stay
• Oncology patients of any diagnosis discharged
from UWMC to ambulatory care at SCCA
• Pre-post design
• Intervention
 Discharge teaching
 Monitoring of symptoms and adherence
 Prompting
• Procurement assistance
Cochrane review (Hayes, 2008); Berry, 2014; Winklejohn,2010; Schneider,
2011; Sommers, 2012
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Cochrane reviews (Ruiz Garcia; 2013); Lis, 2012
– Medication Reconciliation
– Post Discharge Teaching Telephone Call
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Berry, Cunningham, Eisenberg, Wickline et al. , 2014;
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Where’s the E? – Medication
Adherence
Where’s the E? – Decisional
Conflict
• Discharge teaching
• Significant improvements in patient reported
knowledge of medication
»
»
»
»
Name
Dose
Route
Frequency
Berry, Cunningham, Eisenberg, Wickline et al. , 2014;
“Let me tell you what you need to
know”
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;
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“Let me set you up with some
information”
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B
r
e
a
s
t
Ovarian cancer
Ovarian cancer
Prostate cancer
C
a
n
c
e
r
37
B
r
e
a
s
t
•About 50% of women in the US do not receive guideline and
evidence-based therapy for ovarian cancer; therapy that leads to
significant survival advantages.
•They do not go to gynecologic-oncologists, do not receive
adequate surgical staging and do not receive adjuvant
chemotherapy.
•Why not?
•Not informed about options; distance, economics
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Where’s the E? – Decisional
Conflict
• Choices in the high risk setting
• Choices between surgical approaches
•Lumpectomy, mastectomy
• Choices about chemotherapy
• Choices about oral agents after definitive therapy
• Decision aids reduce conflict and regret
in women deciding about breast
conserving surgery vs mastectomy
C
a
n
c
e
r
39
;
40
Waljee, 2007; Lam, 2013
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2/3/2014
Coaching customized to race and age
Decisional control coaching video
The Personal Patient Profile-Prostate (P3P)
A decision support system to prepare a man to
engage in shared decision making with a
consulting health care provider
Prostate cancer
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RCT Multi-site Trial
Our results
• The intervention had a beneficial effect; reducing
decisional conflict
• Seattle
 UWMC/SCCA
 VA
 Seattle Prostate Institute
• Philadelphia –FCCC
• Augusta Georgia-Medical College of GA
• San Antonio- Univ of TX and VA
NINR 2006-2009
 Men receiving the P3P intervention reported significantly
less conflict six months after the on-study consult visit.
• Differences in men at the various study sites
 At baseline, men of minority race and ethnicity and those
who were not home Internet users were not as conflicted
and thought they knew what to do
 Yet, the strongest effect of the intervention was at such sites
Berry et al, 2013
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Bring it back
The Disconnect
• What to do with our
findings to MAKE a
DIFFERENCE?
• What will you do?
• Will you SPAWN?
 Will you “scrap the
gap?”
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Bibliography
Finally
Knowing is not enough; we must apply
Willing is not enough; we must do
Von Goethe
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regarding evidence-practice gaps: a literature review. Implement Sci 5:11, 2010
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practice in US nurses: critical implications for nurse leaders and educators. J Nurs
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fatigue management. J Pain Symptom Manage 39:486-501, 2010
Berry et al., Improving Patient Knowledge of Discharge Medications in an Oncology 48
Setting. CJON. In press. Accepted Oct 2013
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