• Associate Professor Alison Ferguson. Speech Pathology Discipline Convenor & Program Co-Ordinator Newcastle Uni.

• Paula Machin. Speech Pathologist. Rankin Park Centre.

• Megan Alston. Speech Pathologist. Greater Newcastle Sector Community Stroke Service.

• Georgi Laney. Speech Pathologist. Rankin Park Centre.

The quality of life experienced by people living with chronic aphasia.

What factors contribute positively to quality of life and participation in the community.

What factors disadvantage quality of life and participation.

The Stroke Impact Scale

The Assessment of Quality of Life (AQoL) instrument

Dartmouth COOP Functional Assessment Charts/

WONCA

MOS SF 36

Chose Dartmouth COOP and AQoL.

Comparison of QOL Measures

Criteria COOPWONCA

SF36 AQoL SIS

Language Function - Impairment X X X X

Functional Communication - Activity X X Some Some

Emotional Health ! ! ! !

Psychological Well Being X X X X

Social Health - contacts and/or activities ! ! ! X

Physical Health ! ! ! !

Reasonable established validity & reliability ! ! ! !

Previously used successfully with people with Aphasia ! ! ! X

Quick and easy to administer. ! X ! X

Source for domains language functioning impairment level, functional communication activity level, emotional health,social health, psychological health : Cruice, Worrall, Hickson, Murison (2003).

• Descriptions plus simple line drawings.

• Instructed to circle the number in the box that describes you the best.

Questions

1. Physical Fitness : During the past 2 weeks…What was the hardest physical activity you could do for at least 2 minutes? 1= Very Heavy 5 = Very light

2. Feelings : During…How much have you been bothered by emotional problems such as feeling anxious, depressed, irritable or downhearted and sad? 1 = Not at all. 5 = Extremely

3. Daily Activities : During…How much difficulty have you had doing your usual activities or tasks, both inside and outside the house because of your physical and emotional health? 1 = No difficulty at all 5 = Could not do

4. Social Activities : During…Has your physical and emotional health limited your social activities with family, friends, neighbours or groups? 1 = Not at all 5 = Extremely

5. Changes in Health : How would you rate your overall health now compared to 2 weeks ago? 1 = Much better 5 = Much worse

6. Overall health : During…How would you rate your health in general? 1 = Exc 5 = Poor

DC Results

0

1

2

3

4

5

6

1 2 3 4 5 6 7

Subjects 1 to 7 Most to Least Severe

DC

Self

Rati

ng

Seven Subjects : most to least severe aphasia left to right.

• Permission from authors is required before use.

• Five sections, three multiple choice questions in each.

• Choose one of four statements in each question.

• Please circle the alternative that best describes you during the last week.

• Other versions available ( telephone interview).

1. Illness :

• Concerning my use of prescribed medicines

• To what extent do I rely on medicines or a medical aid?

• Do I need regular medical treatment from a doctor or other health professional?

2. Independent Living :

• Do I need any help looking after myself?

• When doing household tasks

• Thinking about how easily I can get around my home and community

3. Social Relationships :

• Because of my health, my relationships generally..

• Thinking about my relationship with other people..

• Thinking about my health and my relationship with my family…

4. Physical Senses :

• Thinking about my vision, including when using my glasses or contact lenses if needed

• Thinking about my hearing, inlcuding using my hearing aid if needed

• When I communicate with others

6. Psychological Well-Being :

• If I think about how I sleep

• Thinking about how I generally feel

• How much pain or discomfort do I experience?

AQOL Results

0

0.5

1

1.5

2

2.5

3

3.5

4

4.5

1 2 3 4 5 6 7

AQ

OL

Rati

ng

AQ1

AQ2

AQ3

AQ4

AQ5

AQ6

AQ7

AQ8

AQ9

AQ10

AQ11

AQ12

AQ13

AQ14

AQ15

Seven Subjects, most to least severe aphasia left to right.

Questionnaire completed by people after their stroke.

Have also agreed to be contacted for research purposes.

Negotiated HSR support to gain anonymous consent.

Contacted if two or more years post stroke.

Three hundred mailouts completed by HSR.

• Separate information for person with aphasia and carer.

• Explanation, outline and request for participation.

• Information on frequency of any word finding difficulties or slurred speech.

• Completed Dartmouth Coop QOL.• Information whether needed

assistance and how much.

No reply = 163

Informed Deceased = 3

“No Aphasia” = 15

Refusal = 61

Return To Sender = 36

Agreed to Participate = 22 (7%)

Considered all those who indicated current communication difficulties and completed all information.

Sixteen people contacted for :

Personal and medical history

History of stroke and rehabilitation

Information on social activities

Information about cognition

Willingness to participate in focus groups

Availability for focus groups.

Not Collated as yet.

Eight people with aphasia interested and invited to focus groups. Seven carers.

One couple unable to attend on the day.

• Volunteer transport for two people. Others had own transport.

• Charlestown Community Centre.

• Focus Group 1. Four people with aphasia and three carers.

• Focus Group 2. Three people with aphasia and three carers.

• Afternoon tea provided.

• AQoL administered on arrival.

• Conversation about living with aphasia.

• Focus group facilitator. Information and guidance for opportunity for all to talk.

• Two speech pathologists took notes.

• Conversation tape recorded by two recorders at opposite ends of the table.

• Audiotapes to be transcribed and analysed for information and themes.

• Aphasia Severity Rating Scale (Boston) scored by research time after focus groups. 0 = No usable speech or aud comp

5 = Minimal discernible speech handicaps

• Rating Scale Profile of Speech Characteristics (Boston) completed (not Repetition or Auditory Comprehension sections).

• Three subjects = Severity 1

One subject = Severity 3

Two subjects = Severity 4

One subject = Severity 5

Initial Impressions

Focus Group One• Large emphasis on health issues• Medication monitoring, toileting,

and fatigue were dominant factors limiting social participation.

Focus Group Two• Communication harder to compensate

for than physical impairments.• Desired more education about and

preparation for living with stroke and aphasia in the community.

• Wanted more opportunities to meet and network with other similar people.

Further Results Pending.

• Heart and Stroke Register very valuable

• Large and complicated mailout difficult for people with more severe aphasia (subject bias).

• Telephone interviews informative. Able to speak to people with aphasia. Would be good if could be tape recorded. More specific comments on aphasia need including.

• Focus Groups difficult to facilitate. Problem with dominant speakers. Difficult eliciting specific information desired.

• Poor quality audiorecordings, needs addressing.