JOYCE NEUMANN, APN, PH.D.

Houston, USA• Clinical Nurse and Program Manager, Bone Marrow

Transplant Unit at The University of Texas MD

Anderson Cancer Center

• Major professional experience has been as advanced practice nurse

and manager of advanced practice nurses as Program Director in

Stem Cell Transplantation at a major US comprehensive cancer

center. Professional presentations on nursing, nursing ethics, SCT

nursing have been given nationally and internationally (Japan,

Saudi Arabia, Brazil, Korea, and Australia). Research and

publications focus has been on ethical issue in oncology care, SCT

patients’ quality of life and experience, patient treatment for

GVHD, and moral distress, compassion fatigue and burnout of SCT

care providers. Currently principle investigator on a protocol with

the National Marrow Donor Program examining the prevalence of

work-related distress, work-life balance and career satisfaction

among nurses, NP/PA, pharmacists, physicians, and social workers.

Dr. Kian Ang Memorial Lecture

Dr. Ang exceptional physician,

scholar, scientist, researcher,

mentor, supporter of

nurses/nursing

Nurses who worked with him

described him as “loved to teach”

“loved by patients” “empowered

nurses to do their best” “shared

vision – patient safety” “concerned

about what nurses thought”

Nurse’s role in the Interprofessional Team

Caring for the Hematologic Malignancy

Patient

Joyce Neumann PhD, APN, AOCN, BMTCN

Program Director, SCTCT

Roles of Nurse in Care of Hematological

Malignancies to Improve Patient Care

Clinical nurse - inpatient, outpatient

Research nurse – outpatient, inpatient

Nurse Researcher, faculty School of Nursing –

provide the evidence to improve symptom

management, quality of life

Advanced Practice Nurse - Clinical Nurse Specialist,

Nurse Practitioner, Clinical Nurse Leader

Nurse Administration – manager, director to improve

quality of care by providing resources for nurses to

provide “best care”

Traditional Role of the Oncology NurseDirect patient care -

Assessment, Plan, Intervene, Teach, Evaluate

“First line” of interaction with the patient

Patient Advocate – Ethical IssuesExamine Quality of Life Issues –

impact of the medical diagnosis Maintain standard of nursing careMember of nursing team(nurses on

unit, professional organization) and medical team (carries out orders to achieve the medical plan of care)

Advanced Practice Registered Nursing

(APRN) Nurse Practitioner – expanded scope of practice allow for

diagnosing, devise plan of care, order blood, tests, prescribe

and treat (symptoms, side effect of trx) within department and

institutional guidelines and state rules and regulations

Clinical Nurse Specialist and Clinical Nurse Leader (newer)

following nursing model of expert care provider.

Methods for Nurses to Prepare for Roles

Education (US) – (mid Associate – China), Associate degree,

baccalaureate degree, masters degree, doctorate in nursing

practice (DNP), PhD - research focused

Certification – Oncology Certified Nurse (OCN); Advanced

Oncology Nurse Practitioner/Clinical Nurse Specialist,

Board Certified – Medical Surgical; and subspecialty

certification - BMTCN

Continuing education – conferences, professional meetings.

Professional organizations – as member, officer, and content

expert

Methods to measure quality care

National standards – National Database Nursing Quality Indicators

benchmark for CLABSI, falls, pressure ulcer, catheter UTI,

nursing hours per patient day; Oncology Nursing Society

guidelines for oncology nursing practice; NCCN Guidelines

Unit based/institutional standard – time until first dose of antibiotics

patients with neutropenic fever, review medication errors –

corrective action (communication, education), patient safety net

errors and near misses

Patient satisfaction – pain control, communication

Retention rates – turnover

NATIONAL STANDARDS: Total RN Hours/Patient Day(National Database Nursing Quality Indicators [NDNQI] Data)

11.14

10.56 10.7010.38 10.31

10.05 10.24

10.4810.29

10.58

10.01 10.119.92 9.90

9.639.43 9.51 9.59 9.55

9.55

9.919.54

9.51 9.23 9.41

9.09 9.119.34

9.12

9.43

7.00

8.00

9.00

10.00

11.00

12.00

13.00

1Q12 2Q12 3Q12 4Q12 1Q13 2Q13 3Q13 4Q13 1Q14 2Q14

G18/G17W SCT NCI AMC

Total Falls Per 1,000 Patient Days

(National Database Nursing Quality Indicators [NDNQI]

Data)

1.80

3.13

1.20

1.692.10 1.95

2.85

3.66

2.82

2.442.60

3.25

2.39

3.01

3.35

2.35

2.74

2.26

3.303.35

2.97

2.95 2.732.48

3.13 2.672.85

2.24

3.303.28

0.00

0.50

1.00

1.50

2.00

2.50

3.00

3.50

4.00

1Q12 2Q12 3Q12 4Q12 1Q13 2Q13 3Q13 4Q13 1Q14 2Q14

G18/G17W SCTCT NCI AMC

PerSurveyed Patients with Unit Acquired Pressure Ulcers

(National Database Nursing Quality Indicators [NDNQI] Data)

0 0 0 0 0 0 0

1.06 1.09

1.39

00 0 0 0 0 0 0 0 0 0

0.32

0 0 0 0 0 0 0 0 0 0 00

0.2

0.4

0.6

0.8

1

1.2

1.4

1.6

4Q11 1Q12 2Q12 3Q12 4Q12 1Q13 2Q13 3Q13 4Q13 1Q14 2Q14

G18/G17W SCT NCI AMC

Hematology CLABSI Rate

(Per 1000 CVC Line Days – Intellechart Data)

FY 2013

CVC & Lab EducationCHG Showers &

Curos Caps

Push-Pause Education

87%93%

96%91%

86%

93%

0%

20%

40%

60%

80%

100%

120%

July - Nov. 2008

(Cultures draws

exclusively by lab

techs)

April- May 2009

(start of central

line culture draws

by RNs)

June 2009

(Central line

culture draws

standardly drawn

by RNs)

Oct - Nov 2009 Aug- Oct 2010 Sep - Oct 2011 Apr- Aug 2014

<60 minutes

61-90 minutes

91-120 minutes

>121 minutes

UNIT BASED: Neutropenic Order Activation

Time and Trends from Order Activation to Time of First

Medication Given

Unique areas of nursing practice in

Hematologic Malignancies – Oncology

Research nursing - evaluate appropriateness of

patient for research study, teach, facilitate

informed consent, observe toxicity, coordinate

study documentation, work with sponsor

Survivorship program – APRN

GVHD program - APRN

Survivorship CareRisk Reduction and Early Detection

Wellness promotion

Nutrition

Exercise

Sun protection

Meticulous self exams: oral and skin

Weight control

Control of co-morbid conditions

Re-vaccination

Risk factor and age related screening

Cancer

Blood pressure

Lipid

Psychosocial factors

• Fatigue

• Sleep disorders

• Body image disturbance

• Anxiety disorders, depression

• Post traumatic stress disorder

• Post traumatic growth: positive changes in quality of life – new appreciation for life

SCTCT Department specific Standards –

Survivorship – K. Stolar APN

Professional organization – Oncology Nursing

Society (ONS)

Putting Evidence into Practice - PEP

International Society of Nurses in Cancer Care –

guide to practice (new blog starting)

It takes a team – with a shared Mission and

Vision to provide the best care for our patients

Nancy Tomczak, RN, OCN

Nicholas Szewczyk RN, MSN, NP-C

Joyce Neumann, PhD, APN, AOCN, BMTCN

Kelly Brassil PhD, RN, AOCNS

The Problem Weakness and fatigue post Stem Cell Transplantation

Prolonged and Multiple Hospitalizations

Anorexia/Cachexia syndrome

Long term use of Glucocorticoid Steroids

Physiologic and Psychological barriers

Failure to Thrive, Depression

Co-morbidities, advanced ages

Nursing and Ancillary Staff often takes early lead in identifying patients with increase risk of developing major debilitative states

Early Interventions Rehabilitation Success group Formed

Motivated and Moving (M&M’s ®) Program Developed Encourage patients and staff in meeting the goal of

physical activity

Activities include: Exercise class, walking on unit

using exercise equipment

social activities outside of room

Motivated and Moving Program Patients place marker on their door upon physical activity

completion Bandana - Earned for every 15 Motivated and Moving

markers Impact:Popular with patients andStaffUnclear Benefit

Motivated and Moving (M&M’s ®) Research Grant Funded

Permission from Mars® Corporation to use M&M’s ® name and Characters

Aim of Study:

Evaluate if participation in an incentive-based mobility program (Motivated and Moving) impacts fatigue, physical conditioning, performance status and quality of life in adults undergoing allogeneic SCT.

Methodology DESIGN: One-group repeated measures

Randomized control trial ruled out

SAMPLE: N=83 provides .80 power to detect fatigue score changes

90 subjects accrued, 85 completed; 2 withdrawals and 3 treatment related deaths

INCLUSION CRITERIA:

Adult, Admitted for allogeneic SCT

EXCLUSION CRITERIA:

Autologous SCT admission

Previous SCT(s)

Non-SCT related chemotherapy or post SCT complications admission

INSTRUMENTS INSTRUMENTS:

Functional Assessment of Cancer Therapy (FACT-BMT)

ECOG Performance Status

Brief Fatigue Inventory (BFI)

Six-Minute Walk Test

Multidisciplinary Team Members Advanced Practice

Nurses:

Nursing

Clinical Nursing

Statisticians

Physical Therapist

PROCEDURESConsent

Oriented to Motivated & Moving

Six minute walk test and administration of instruments

Patients logged activity using a time clock

Instruments administered at three points

Staff follow-up of points and distribution of rewards

Age Mean = 53.0 SD 10.1 Range: 26.0-68.0

N %

Gender MaleFemale

4540

52.9447.06

Race CaucasianAfrican AmericanHispanicAsianOther

685822

80.005.889.412.352.35

Type of Stem Cell Transplant

Matched Related Donor (MRD)Matched Unrelated Donor (MUD)Haploidentical Donor (HAPLO)Umbilical Cord Donor (CB)

314653

36.4754.125.883.53

Scores Between Time PeriodsAssessment Mean (SD) Min-Max

Mean Difference

(95% CI) p-value

BFI

Discharge - Admission 2.8 (2.0) 0 - 8.7 0.7 (0.2 - 1.2)* 0.0059

Day-1 - Admission 4.4 (2.4) 0 - 9.4 1.6 (1.2 - 2.1) ϯ <0.0001

Discharge - Day-1 3.5 (2.3) 0 - 9.4 -0.9 (-1.4 - -0.4) ѱ 0.0012

6 Minute Walk

Discharge - Admission 337.5 (117.1) 61.2 - 647.9 -12.9 (-38.2 - 12.3) * 0.3107

Day-1 - Admission 313.0 (119.8) 63.3 - 640.5 -33.0 (-55.9 - -10.1) ϯ 0.0052

Discharge - Day-1 332.2 (124.8) 108.2 - 633.7 23.4 (0.6 - 46.2) ѱ 0.0447

FACT-G

Discharge - Admission 81.1 (13.2) 40 - 102 -3.6 (-6.2 - -1.1) * 0.0058

Day-1 - Admission 71.0 (14.1) 38 - 104 -10.1 (-12.3 - -7.9) ϯ <0.0001

Discharge - Day-1 77.5 (15.0) 34 - 106 6.6 (4.1 - 9.1) ѱ <0.0001

FACT-BMT

Discharge - Admission 109.1 (17.2) 59 - 139.8 -6 (-9.3 - -2.8) * 0.0003

Day-1 - Admission 95.6 (18.2) 58 - 138.0 -13.1 (-15.9 - -10.4) ϯ <0.0001

Discharge - Day-1 103.0 (19.3) 47 - 136.7 7.8 (4.6 - 10.9) ѱ <0.0001

• ECOG: No Significant Changes

Six Minute Walk Results

280

300

320

340

360

380

6 M

inu

te W

alk

Adm

ission

Day

-1

Disch

arge

Assessment

Low Minutes Med Minutes High Minutes

6 Minute Walk scores for low,

med, and high values of

minutes

BFI & FACT-BMT - NS

difference related to time

spent in activity

Beta P-value 95% LB 95% UBAverage

Minutes

Admission

through Day-1 0.76 0.002 0.28 1.24Average

Minutes Day-1

through

Discharge 0.97 0.000 0.45 1.49

Assessment

Day-1 (ref:

Admission) -74.08 <0.001 -109.76 -38.39Discharge

(ref:

(Admission) -56.38 0.001 -89.84 -22.92

Length of Stay After Transplant

As time spent walking increased by 10 minutes, days until discharge

decreased by 10 percent, p = 0.026

Summary During hospitalization, fatigue increased and QOL

decreased, but improved from Day – 1 through time of Discharge

Improved 6 minute walk scores for participants with greater activity time

Pilot data supports decreased length of stay for those who engage in higher levels of activity

Future Studies include RCT

Motivated and Moving Project has been implemented across institution

Like A Bridge I Never Crossed Before: African-

american, Latino, And Caucasian Patients’

Experience Before, During And After Stem Cell

Transplantation- Phenomenological Study

Joyce Neumann

LITERATURE REVIEW

An integrative review was conducted. Time limits

were January 1988 and December 2012.

Of approximately 200 studies search identified 27

were selected that met the criteria.

Distressingly little is know about the experience of

ethnic minority patients undergoing SCT.

45

RATIONALE FOR STUDY

Significance: understanding patients’ lived

experiences will guide strategies that provide

psychosocial support, enhanced communication, and

educational opportunities to better meet the needs of

SCT patients

Researcher’s relationship to topic:

collaborator on parent study (R01 NR05188),

APRN in area of SCT for 25 years.

46

PHILOSOPHY AND METHODOLOGY (2)

Analytic process involves naïve reading, structural

analysis, and critical analysis in order to discover the

“matter” (the world it opens up and discloses) of the

text and not the psychology of the author (Ricoeur,

1983, 2007).

47

Characteristic Totals

(n=60)

African

American

(n=20)

Latino

(n = 20)

Caucasian (white

non-Hispanic)

(n = 20)

Gender:

Male 29 7 13 9

Female 31 13 7 11

Mean age years (range years) 47

(22-71)

45

(22-64)

48

(22-65)

49

(32-71)

Marital status:

Married 36 8 15 13

Single / Widowed /

Divorced 24

12 5 7

Survival

< or = 100 days 50 17 15 18

6 months 41 16 13 14

1 year 38 15 11 12

3 years 30 11 9 10

5 years 26/59 8/19 8 10

10 years 21/57 (37%) 5/19 (26%) 7 /19 (37%) 9/19 (47%)

Lost to follow-up 3 1 > 3 yrs 1 > 5 yrs 1 > 5 yrs

Education:

Some High School or Less 6 2 4 0

High School Graduate 19 6 4 9

Some College/College

Grad 22

9 9 4

Post-baccalaureate 13 3 3 7

Type of Transplant:

Allogeneic 26 6 10 10

Autologous 34 14 10 10

Intent of Transplant:

for disease control / cure

18/43 11/9 4/16 2/18

INFORMANTS’ DEMOGRAPHIC INFORMATION

NURSING IMPLICATIONS

Consistency in assignments of nurses to patients.

Start every shift by asking patients what their major concerns are, how their family is, and their current expectations for SCT treatment, spend a few minutes of uninterrupted patient-centered time.

Assist nurses to understand the significance of SCT for patient and their likely hopes and fears for their future. Many informants described SCT as a life-changing event.

Assisting patients to have realistic expectations is exceedingly important – advance care planning

Educating patients on nursing roles and cultural differences in nurse roles is likely to be helpful in establishing realistic expectations.

Staff stress and burnout, noted by one informant, suggests that it may be important to address staff members’ compassion fatigue/moral distress by providing support for nursing staff.

CONCLUSIONS

These findings provide guidance for caring for SCT patients and their families and they provide direction of ongoing research.

Implications for care, most convincing is the need for patient-centered care based in an understanding of the contextual factors that affect patient and family coping.

Implications for research, perhaps most compelling is the need for research related to education to ensure informed consent and preparation for treatment related experiences, in accord with patient needs.

References available on request.