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Queensland University of Technology

The missing piece: Self-management support desires of patients with CKD

Kathryn Havas1,2, Clint Douglas1, & Ann Bonner 1,2

1Queensland University of Technology, Brisbane, Australia2Chronic Kidney Disease Centre for Research Excellence, University of Queensland, Brisbane, Australia

Adapted from National Research Corporation, 2015

Havas, Bonner & Douglas. 2016. Journal of Renal Care

Self-management support for people with chronic kidney disease: Patient Perspectives

1. Disease-specific knowledge2. Establishing routine and planning ahead3. Actively participating in healthcare4. Developing and sustaining a positive attitude and caring for

mental and physical wellbeing5. Modifying lifestyle6. Managing medications7. Recognising and effectively responding to symptoms8. Maintaining social and occupational roles9. Engaging and sustaining social support10.Building and sustaining effective relationships with HCPs

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18-245%

25-3916%

40-5929%

60-7943%

80+ 7%

AgeMale40%

Female60%

Gender N = 97

11% 14% 16% 10%

49%

0%20%40%60%80%

100%

≤12 Months

>1≤3 Years

>3≤5 Years

>5<10 Years

≥10 Years

Time since Diagnosed

Unemployed, 7%Casual,

3%

Part time, 22%

Full time, 23%

Retired, 40%

Other (Employed),

5%

Employment1%

14%27%

4%

30%18%

5% 1%0%

20%40%60%80%

100% Level of Education

<$20,00010%

$20,000-$39,999

40%

$40,000-$59,9998%

$60,000-$79,9997%

$80,000-$99,9992%

$100,000-$119,999

8%

$120,000+16%

Unreported9%

Annual Household Income

98 8 8

10

8 89 9

0123456789

10

Desire for Additional Support

59.38 59.0260.64

55.34 56.15 53.48

38.8435.32 36.1 35.47

42.28 42.04

0

10

20

30

40

50

60

70

Age(a) Ed(b) Employ(c) Income(d) Time(e) Gender(f)

Desire for Additional Support

* ** * ~

* p < .05~ p = .05a <60 vs 60+; b >10 years vs ≤10 years; c Employed vs Not Working; d >$40,000 vs <$39,999; e ≥10 years vs <10 years; f Female vs Male

*

Delivery Preferences

• Overall, most (72.2%) would attend SMS sessions during business hours• 100% of unemployed• 47.1% of employed

• Most happy with clinic environment (41.7%) or no preference (45.8%)

• About half (48.5%) open to individual/group/mix• 24.7% group• 26.8% individual

• Approximately half (49.5%) would like to bring support

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57.7%

70.1%

52.6%

71.1%

45.4%

0%

10%

20%

30%

40%

50%

60%

70%

80%

90%

100%

GP Nephrologist Nurse SM Expert No Pref

Educator Preferences Additional Suggestions

• Only 10 participants identified online & smartphone tools as potentially helpful

• Hard copy materials (3 participants)• Accessibility for rural patients (2 participants)• Importance of educator being a good communicator (2

participants)• Individualised (2 participants)• Other suggestions:

• Videos• Telephone sessions• Program through hospital• Early in disease process

Implications

• Self-management complex & multifaceted• Not give information and instructions à patients “comply”

• Receivers vs. engagers• Different/more intensive strategies may be needed for receivers

• Need to empower patients early in disease process to effect change

• Multi-modal learning formats• Face-to-face, phone, written, internet

• Preferences for nephrologist or self-management expert to deliver

Person-Centred Care

What do people want?

To inform design of programs

Implementation of interpretation of what people

want

How did we do?

Evaluation of programs