When you’ve got Parkinson’s, you’re going at half speed

Dr Eleanor Handel

A/Prof Catherine Harding

A/Prof Geraldine Duncan

“When you’ve got Parkinson’s, you’re going at half speed”* Coping with Parkinson’s Disease in Rural and Regional

Australia.

*Male with Parkinson’s Disease, Wagga Wagga

BACKGROUND

Parkinson’s Disease is the second most common neurodegenerative disease1,2

Currently affecting approximately 70 000 Australians3

Extremely high burden of disease

WHY RURAL?

Parkinson’s has a higher prevalence in rural compared to metropolitan regions4-7

People with Parkinson’s living in rural and regional areas have been found to have lower Health Related Quality of Life than their metropolitan counterparts8

EVOLVING SITUATION

Previous research in Wagga Wagga (2011) reported issues such as

lack of health staff, funding and information regarding Parkinson’s Disease in the

area9

Access Economics report (2014) Suggested access to Parkinson’s services in regional areas particularly problematic3 Need for research into more effective models of care for people with Parkinson’s3

Recent initiation of Parkinson’s nurse specialist and dance therapy classes

“Quality of life? What life have I got? Parkinson’s has

robbed me of my life”

- Male, living in Wagga, 68

RESEARCH AIMS

1. Examine the impact of Parkinson’s Disease on the quality of life of individuals living in regional NSW

2. Assess these patients’ opinions regarding access to health and support services

LOCATION – WAGGA WAGGA

Major regional centre for the Riverina Region in NSW

Classified as “inner regional” or as a “large rural centre”

Currently one neurologist and one rotating neurology registrar

METHODS

Semi-structured interviews and quality of life questionnaires

Modified grounded theory with an iterative approach to data

Recruitment

Interviews (purposive sampling)

Data analysis and themes identified

Further interviews (theoretical sampling)

Themes confirmed or challenged

Themes developed

Participant demographics

Recruitment • Wagga Wagga Parkinson’s NSW

Support Group • Parkinson’s Nurse Specialist • Parkinson’s Disease Seminar Day

Recruitment





Themes developed

Participant demographics Data collection

1. Participant demographics

• Gender, age, distance from town, time since diagnosis

• Parkinson’s Disease Quality of Life Questionnaire (PDQL)10

2. Interviews • Semi-structured • Patients and carers • Questions focused on: diagnosis, disease

management, impact on quality of life, medical intervention, allied health intervention and other services

Recruitment





Themes developed

Participant demographics

Data Analysis • Full transcription of voice recordings • NVivo 10 – qualitative analysis software Analysis undertaken concurrently with collection Iterative process until theoretical saturation was achieved

RESULTS – PARTICIPANT DEMOGRAPHICS

Table 1: Profile of participants from individual interviews Characteristic Patients (n) Carers (n)

Gender Male 7 1

Female 5 4

Age (years)

60-64 2 2 65-69 3 1 70-74 6 0 75-79 1 2

Distance from Wagga Wagga (km)

0 9 4 > 40 1 0 > 60 2 1

Time Since Diagnosis (years)

1-4 8 5-8 2

9-12 1 13-16 1

17 people were interviewed

• 12 with Parkinson’s • 5 Carers

PARTICIPANT DEMOGRAPHICS PATIENT SAMPLE IS REPRESENTATIVE ACROSS THE SPECTRUM OF QUALITY OF LIFE SCORES

Table 2: Parkinson’s Disease quality of life questionnaire (PDQL)

Patient Range Patient Median Minimum Possible Maximum Possible

Parkinson symptoms 31 – 62 47 14 70

Systemic symptoms 17 – 34 26 7 35

Emotional symptoms 23 – 42 32 9 45

Social symptoms 13 – 32 27 7 35

Total 84 – 167 125 37 185

RESULTS

1. Factors which negatively impact quality of life

2. Services which can address these factors Medical professionals Parkinson’s nurse specialist Allied health Dance therapy

IMPACT ON QUALITY OF LIFE

Isolation Distance Transport Self-consciousness Lack of information about services

Loss of independence Rural self sufficiency Stress on partner/carer relationship

“The more you shake the more you’ll want to stay at home and not go out and communicate”

- Female with Parkinson’s, ex-farmer

“I have a certain responsibility, but he has an equal responsibility not to make my life a misery. I think that’s a hard balance.”

- Female carer, 62

IMPACT ON QUALITY OF LIFE

Loss of identity Early retirement Manual labourers Forced to leave homes

Future care requirements Concern escalating care in rural areas

“It’s more about the future and how you live the rest of your life that concerns me…Parkinson’s will eventually get very ugly for me”

- Male with Parkinson’s, 61 , lives alone

“I think [my husband] would’ve loved to stay out on the land, he was 77 and used to work from daylight till dark” -Female Carer

MEDICAL PROFESSIONALS

Delay in diagnosis

Long waiting times for initial neurological review

Single, general neurologist

General practitioner reluctance to change doses

Lack of awareness of appropriate services

“[The GP] has no idea, and the majority of people I have spoken to with Parkinson’s have never heard of [specific Parkinson’s programs]”

- Female carer, 62

“I’d been crook for a fair while and I was going to different doctors and nobody could find anything wrong with me…I’m not a hypochondriac!” - Male with Parkinson’s, 67

ALLIED HEALTH INTERVENTION

Physiotherapy Improvements in quality of life from physiotherapy program Desire for ongoing physiotherapy and follow up

Occupational therapists and speech therapists underutilised

“There were a lot of things I couldn’t do. I couldn’t put my shoes or socks on, couldn’t do up my buttons, couldn’t strum my guitar. And after I finished the [physiotherapy] program I could do it.”

- Male with Parkinson’s, 74 years old

PARKINSON’S NURSE SPECIALIST

Highly valued by patients and carers

Reduced sense of isolation Point of contact Phone calls

Provided Education

“I lost about 10kg, it got to the stage I was so desperate, I couldn’t sleep, I was awake for 24 hours at that time, and that’s when I thought of [the nurse] and rang her…she said ‘you’re overmedicated’”

- Female with Parkinson’s, 67, 100km from Wagga

“Someone out there who cares, and knowing what we’re going though…I think she’ll be even more useful in the future”

- Female carer, 78

DANCE THERAPY

8 participants had attended the classes

Valued for exercise and movement

Facilitated socialising Reduced isolation

“It’s a chance to get out with other people, otherwise you’re isolated”

- Male with PD, 74

DISCUSSION AND CONCLUSIONS

Isolation and loss of independence Stoical acceptance Is telehealth the answer?

General practitioner knowledge and skills Consistent with literature4,9 Education and awareness programs Diagnosis Management Appropriate referral

“I’m happy with what I’ve got” -male with PD, 79

DISCUSSION AND CONCLUSIONS

Parkinson’s Nurse Specialist Rated of high relative importance to patients11 New evidence regarding rural benefit

Dance therapy classes Shown to improve mobility, gait, and health related quality of life in individuals with

Parkinson’s12-15 Facilitates socialising and creating a sense of community in isolated rural populations

“you can become self-conscious …..but when you’re out with a group that’s all doing the same thing, it’s better, you talk to each other.” -female with PD, 71

LIMITATIONS

Generalisability - this was a small, specific group of individuals

It is likely that the issues would be similar in other rural communities

REFERENCES

1. Tanner C. M. and Goldman S. M. Epidemiology of Parkinson’s disease. Neurologic Clinics, 1996. 14, 317–335.

2. De Lau, L.M. and Breteler, M.M. Epidemiology of Parkinson's disease. The Lancet Neurology, 2006. 5(6), pp.525-535.

3. Access Economics for Parkinson's Australia Inc. Living with Parkinson's Disease: An updated economic analysis. 2014 [21/06/2016];

Available from: http://www.parkinsons.org.au/Documents/Living%20with%20Parkinsons%2027082015%20FINAL.pdf

4. Peters, C.M., et al., Prevalence of Parkinson’s disease in metropolitan and rural Queensland: A general practice survey. Journal of Clinical

Neuroscience, 2006. 13(3): p. 343-348.

5. Priyadarshi, A., et al., Environmental Risk Factors and Parkinson's Disease: A Metaanalysis. Environmental Research, 2001. 86(2): p. 122-

127.

6. Kuopio, A.M., et al., Changing epidemiology of Parkinson's disease in southwestern Finland. Neurology, 1999. 52(2): p. 302-8.

7. Tandberg, E., et al., The epidemiology of Parkinson's disease in the county of Rogaland, Norway. Movement Disorders, 1995. 10(5): p.

541-549.

8. Soh, S.E., et al., Rural living and health-related quality of life in Australians with Parkinson's disease. Rural Remote Health, 2012. 12: p.

2158.

REFERENCES

9. Duncan, G.F. and P. Rositano, Parkinson's disease in regional Australia. Rural Remote Health, 2011. 11(4): p. 1658.

10. de Boer, A.G., et al., Quality of life in patients with Parkinson's disease: development of a questionnaire. J Neurol Neurosurg Psychiatry, 1996. 61(1): p. 70-4.

11. Lee, J.M., Shine, J.M. and Lewis, S.J., 2015. What matters to people with Parkinson’s disease living in Australia?. Journal of Clinical Neuroscience,22(2), pp.338-341

12. Earhart, G.M., Dance as Therapy for Individuals with Parkinson Disease. European journal of physical and rehabilitation medicine, 2009. 45(2): p. 231-238.

13. de Dreu, M.J., et al., Rehabilitation, exercise therapy and music in patients with Parkinson's disease: a meta-analysis of the effects of music-based movement therapy on walking ability, balance and quality of life. Parkinsonism Relat Disord, 2012. 18 Suppl 1: p. S114-9.

14. Mandelbaum, R. and A. Lo, Examining Dance as an Intervention in Parkinson’s Disease: A Systematic Review. American Journal of Dance Therapy, 2014. 36(2): p. 160-175.

15. Hackney, M.E. and G.M. Earhart, Effects of Dance on Movement Control in Parkinson’s Disease: A Comparison of Argentine Tango and American Ballroom. Journal of rehabilitation medicine : official journal of the UEMS European Board of Physical and Rehabilitation Medicine, 2009. 41(6): p. 475-481.