Content » Vol 45, Issue 5

Original report

Use of the International Classification of Functioning, Disability and Health (ICF) to describe patient-reported disability in primary brain tumour in an Australian community cohort

Participant reported issues due to brain tumour linked with the ICF categories using linkage rules

Tables II lists the patient reported issue in everyday life activity due to brain tumour, using an open-ended questionnaire. There was 100% agreement between reviewers for linkage of participant-­reported problems with the ICF categories. No problems were identified by participants that could not be linked to the standardised ICF checklist. Seventy-five participants (71%) reported at least one issue which was linked with the categories of ‘activities and participation’ and ‘environmental factors’ components of the comprehensive ICF-checklist. A total of 121 relevant concepts corresponding to 32 ICF categories of the ICF-checklist were identified: 25 categories in ‘activities and participation’ and 7 in ‘environmental factors’ components. The most frequent problems reported were linked with ‘d240’– Handling stress and psychological demands (60%), ‘d240’ driving (24%) and ‘d640’ doing housework (23%). Few participants reported concepts related to ‘environmental factors’ component and none reported additional aspects of health areas not covered by the ICF checklist.

Table II. Participant reported limitations and the frequency of limitation in the linked categories for the components ‘Activities and Participation’ and ‘Environmental factors’ (n = 106)

ICF checklist code

ICF category description

Total number of participants linked responses as affected.

n (%)

Activities and Participation

Learning and applying knowledge

d110

Watching

7 (6.6)

d175

Solving problems

1 (0.9)

General tasks and demands

d220

Undertaking multiple tasks

1 (0.9)

d230

Carrying out daily routine

21 (19.8)

d240

Handling stress/other psychological demand

63 (59.4)

Communication

d310

Communicating with – receiving – spoken messages

8 (7.5)

d330

Speaking

6 (5.7)

Mobility

d430

Lifting and carrying objects

3 (2.8)

d440

Fine hand use (picking up, grasping)

6 (5.7)

d450

Walking

12 (11.3)

d470

Using transportation (car, bus, train, plane, etc)

1 (0.9)

d475

Driving (riding bicycle and motorbike, driving car, etc)

25 (23.6)

Self care

d510

Washing oneself (bathing, drying, washing hands, etc)

1 (0.9)

d550

Eating

3 (2.8)

d570

Looking after one’s health

4 (3.8)

Domestic life

d620

Acquisition of goods and services (shopping, etc)

1 (0.9)

d640

Doing housework

24 (22.6)

Interpersonal interaction and relationship

d710

Basic interpersonal interaction

1 (0.9)

d760

Family relationships

4 (3.8)

d770

Intimate relationships

2 (1.9)

Major life areas

d830

Higher education

1 (0.9)

d850

Remunerative employment

19 (17.9)

d870

Economic self-sufficiency

3 (2.8)

Community social and civic life

d910

Community life

3 (2.8)

d920

Recreation and leisure

2 (1.9)

Environmental factors

Support and relationships

e310

Immediate family

2 (1.9)

e320

Friends

1 (0.9)

e355

Health professionals

7 (6.6)

Attitudes

e410

Individual attitudes of immediate family members

1 (0.9)

Services system and policies

e540

Transportation services, systems and policies

1 (0.9)

e575

General social support services, systems and policies

1 (0.9)

e580

Health services, systems and policies

2 (1.9)

All positive responses values over 10% frequencies are bolded.

ICF: International Classification of Functioning, Disability and Health.

Impact of brain tumour on the health areas corresponding with ICF categories for ‘activities and participation’

Table III presents the participants’ report of impact (using qualifiers 0–4) and frequency for each ICF category for ‘activities and participation’. The number of problems reported by the participants for ‘activities and participation’ categories in the ICF-checklist ranged from 0 to 4 (median = 16.5, IQR = 7–25). All 50 categories of 9 chapters of ‘activities and participation’ had at least one limitation, of these all except 6 categories were identified as relevant (≥ 10% of participant’s response). The 5 most negative impact reported for corresponding ICF categories of ‘activities and participation’ included: ‘d475’– driving (76%); ‘d910’– recreation and leisure (65%), ‘d220’ – undertaking multiple tasks (59%); ‘d240’ – handling stress and other physical demands (59%), and ‘d430’ – lifting and carrying objects (57%). Thirteen (26%) ICF categories of the checklist were reported by 50% or more of the participants. Category ‘d475’– driving was highly impaired in 50% of the participants, followed by ‘d920’ – remunerative employment (26.4%).

Table III. Participant rating of impact of primary brain tumour on health areas and frequency of limitation for corresponding ICF categories for ‘Activities and Participation’ (n = 106)

ICF checklist code

ICF category description

Total number of participants
linked responses
as affected

n (%)

Not affected

0

n (%)

Mild

1

n (%)

Moderate

2

n (%)

Severe

3

n (%)

Complete

4

n (%)

Learning and applying knowledge

d110

Watching

44 (41.5)

62 (58.5)

28 (26.4)

8 (7.5)

7 (6.6)

1 (0.9)

d115

Listening

44 (41.5)

62 (58.5)

33 (31.1)

9 (8.5)

2 (1.9)

0 (0)

d140

Learning to read

17 (16.0)

89 (84.0)

9 (8.5)

4 (3.8)

2 (1.9)

2 (1.9)

d145

Learning to write

19 (187.9)

87 (82.1)

10 (9.4)

4 (3.8)

1 (0.9)

4 (3.8)

d150

Learning to calculate

21 (19.8)

85 (80.2)

17 (16.0)

2 (1.9)

1 (0.9)

1 (0.9)

d175

Solving problems

43 (40.6)

63 (59.4)

28 (26.4)

10 (9.4)

5 (4.7)

0 (0)

General tasks and demands

d210

Undertaking a single task

36 (34.0)

70 (66.0)

26 (24.5)

8 (7.5)

2 (1.9)

0 (0)

d220

Undertaking multiple tasks

63 (59.4)

43 (40.6)

17 (16.0)

16 (15.1)

21 (19.8)

9 (8.5)

d230

Carrying out daily routine

55 (51.9)

51 (48.1)

1 7 (16.0)

16 (15.1)

21 (19.8)

9 (8.5)

d240

Handling stress/other psychological demand

62 (58.5)

44 (41.5)

28 (26.4)

24 (22.6)

4 (3.8)

6 (5.7)

Communication

d310

Communicating with – receiving spoken messages

21 (19.8)

85 (80.2)

13 (12.3)

5 (4.7)

3 (2.8)

0 (0)

d315

Communicating with – receiving non-verbal messages

20 (18.9)

86 (81.1)

12 (11.3)

5 (4.7)

3 (2.8)

0 (0)

d330

Speaking

34 (32.1)

72 (67.9)

23 (21.7)

7 (6.6)

3 (2.8)

1 (0.9)

d335

Producing non-verbal messages

24 (22.6)

82 (77.4)

13 (12.3)

5 (4.7)

4 (3.8)

2 (1.9)

d350

Conversation

32 (30.2)

74 (69.8)

20 (18.9)

7 (6.6)

4 (3.8)

1 (0.9)

Mobility

d430

Lifting and carrying objects

61 (57.5)

45 (42.5)

27 (25.5)

17 (16.0)

11 (10.4)

6 (5.7)

d440

Fine hand use (picking up, grasping)

48 (45.3)

58 (54.73)

20 (18.9)

12 (11.3)

12 (11.3)

4 (3.8)

d450

Walking

56 (52.8)

50 (47.2)

24 (22.6)

15 (14.2)

13 (12.3)

4 (3.8)

d465

Moving around and using equipment (wheelchair, skates, etc)

44 (41.5)

62 (58.5)

19 (17.9)

11 (10.4)

8 (7.5)

6 (5.7)

d470

Using transportation (car, bus, train, plane, etc)

53 (50.0)

53 (50.0)

16 (15.1)

10 (9.4)

11 (10.4)

16 (15.1)

d475

Driving (riding bicycle and motorbike, driving car, etc)

80 (75.5)

26 (24.5)

14 (13.2)

10 (9.4)

3 (2.8)

53 (50.0)

Self care

d510

Washing oneself (bathing, drying, washing hands, etc)

43 (40.6)

63 (59.4)

20 (18.9)

9 (8.5)

10 (9.4)

4 (3.8)

d520

Caring for body parts (brushing teeth, shaving, grooming, etc)

38 (35.8)

68 (64.2)

18 (17.0)

8 (7.5)

7 (6.6)

5 (4.7)

d530

Toileting

37 (34.9)

69 (65.1)

19 (7.9)

7 (6.6)

6 (5.7)

5 (4.7)

d540

Dressing

41 (38.70)

65 (61.3)

20 (18.9)

7 (6.6)

9 (8.5)

5 (4.7)

d550

Eating

34 (32.1)

72 (67.9)

21 (19.8)

8 (7.5)

3 (2.8)

2 (1.9)

d560

Drinking

31 (29.2)

75 (70.8)

21 (19.8)

5 (4.7)

3 (2.8)

2 (1.9)

d570

Looking after one’s health

40 (37.7)

66 (62.3)

22 (20.8)

8 (7.5)

5 (4.7)

5 (4.7)

Domestic life

d620

Acquisition of goods and services (shopping, etc)

56 (52.8)

50 (47.2)

14 (13.2)

15 (14.2)

13 (12.3)

14 (13.2)

d630

Preparation of meals (cooking, etc)

54 (50.9)

52 (49.1)

12 (11.3)

14 (13.2)

16 (15.1)

12 (11.3)

d640

Doing housework (cleaning washing, laundry, ironing)

59 (55.7)

47 (44.3)

12 (11.3)

14 (13.2)

20 (18.9)

13 (12.3)

d660

Assisting others

57 (53.8)

49 (46.2)

19 (17.9)

2 (1.9)

16 (15.1)

20 (18.9)

Interpersonal interaction and relationship

d710

Basic interpersonal interaction

15 (14.2)

91 (85.8)

10 (9.4)

1 (0.9)

3 (2.8)

1 (0.9)

d720

Complex interpersonal interaction

30 (28.3)

76 (71.7)

20 (18.9)

6 (5.7)

2 (1.9)

2 (1.9)

d730

Relating with strangers

19 (17.9)

87 (82.1)

11 (10.4)

5 (4.7)

3 (2.8)

0 (0)

d740

Formal relationship

15 (14.2)

91 (85.8)

9 (8.5)

3 (2.8)

3 (2.8)

0 (0)

d750

Informal social relationships

29 (27.4)

77 (72.6)

20 (18.9)

5 (4.7)

3 (2.8)

1 (0.9)

d760

Family relationships

27 (25.5)

79 (745.5)

17 (16.0)

8 (7.5)

0 (0)

2 (1.9)

d770

Intimate relationships

34 (32.1)

72 (67.9)

20 (18.9)

7 (6.6)

1 (0.9)

6 (5.7)

Major life areas

d810

Informal education

7 (6.6)

99 (93.4)

5 (4.7)

1 (0.9)

0 (0)

1 (0.9)

14589.png

Impact of brain tumour on the health areas corresponding with ICF categories for ‘environmental factors’

The frequency and participant response grading for barriers (qualifier 0–4) for each category for ‘environmental factors’ component is presented in Table IV. The number of problems reported by participants ranged from 0 to 32 (median = 2, IQR = 0–5). All 32 categories of 5 chapters in this component had at least one limitation and 16 categories were identified as relevant barriers (≥ 10% of participant response). The 5 most frequent barriers reported for corresponding ICF categories include: ‘e250’ – human made change to natural environment: sound (28%); ‘e320’ – support and relationship: with friends (27%), ‘e420’ – individual attitudes: of friends (26%), ‘e225’ – human made change to natural environment: climate (23%); and ‘e410’ – individual attitudes of immediate family (20%).

Table III. Contd.

ICF checklist code

ICF category description

Total number of participants
linked responses
as affected

n (%)

Not affected

0

n (%)

Mild

1

n (%)

Moderate

2

n (%)

Severe

3

n (%)

Complete

4

n (%)

d820

School education

1 (0.9)

105 (99.1)

1 (0.9)

0 (0)

0 (0)

0 (0)

d830

Higher education

10 (9.5)

96 (90.4)

2 (1.9)

3 (2.8)

0 (0)

5 (4.7)

d850

Remunerative employment

55 (51.9)

51 (48.1)

12 (11.3)

8 (7.5)

7 (6.6)

28 (26.4)

d860

Basic economic transactions

33 (31.1)

73 (68.9)

14 (13.2)

12 (11.3)

1 (0.9)

6 (5.7)

d870

Economic self-sufficiency

45 (42.5)

61 (57.5)

17 (16.0)

14 (13.2)

7 (6.6)

7 (6.6)

Community social and civic life

d910

Community life

47 (44.3)

59 (55.7)

16 (15.1)

11 (10.4)

14 (13.2)

6 (5.7)

d920

Recreation and leisure

69 (65.1)

37 (34.9)

20 (19.8)

19 (17.9)

20 (18.9)

9 (8.5)

d930

Religion and spirituality

5 (4.7)

101 (95.3)

4 (3.8)

1 (0.9)

0 (0)

0 (0)

d940

Human rights

3 (2.8)

103 (97.2)

2 (1.9)

1 (0.9)

0 (0)

0 (0)

d950

Political life and citizenship

2 (1.9)

104 (98.1)

2 (1.9)

0 (0)

0 (0)

0 (0)

0 = no problem (0–4% of the time); 1 = mild (5–24% of the time); 2 = moderate (25–49% of the time); 3 = severe (50–95% of the time); 4 = complete (> 95% of the time).

All positive responses values over 10% frequencies are bolded. The 5 categories with highest positive response frequency are printed bold and italicized.

ICF: International Classification of Functioning, Disability and Health.

Table IV. Participant rating of impact of brain tumour on health areas and frequency of limitation for corresponding ICF categories (barriers) for ‘Environmental factors’ (n = 106)

ICF checklist code

ICF code description

Total participants linked responses
as affected

n (%)

Not affected

0

Mild

1

Moderate

2

Severe

3

Complete

4

Products and technology

e110

For personal consumption (food, medicines)

13 (12.3)

93 (87.7)

5 (4.7)

7 (6.6)

0 (0)

1 (0.9)

e115

For personal use in daily livings

15 (14.2)

91 (85.8)

6 (5.7)

8 (7.5)

0 (0)

1 (0.9)

e120

For personal indoor and outdoor mobility and transportation

14 (13.2)

92 (86.8)

5 (4.7)

5 (4.7)

3 (2.8)

1 (0.9)

e125

Products for communication

11 (10.4)

95 (89.6)

5 (4.7)

6 (5.7)

0 (0)

0 (0)

e150

Design, construction and building products and technology of buildings for public use

5 (4.7)

101 (95.3)

1 (0.9)

3 (2.8)

1 (0.9)

0 (0)

e155

Design, construction and building products and technology of buildings for private use

8 (7.5)

98 (92.5)

3 (2.8)

3 (2.8)

1 (0.9)

1 (0.9)

Natural environment and human made changes to environment

e225

Climate

24 (22.6)

82 (77.4)

15 (14.2)

8 (7.5)

1 (0.9)

0 (0)

e240

Light

16 (15.1)

90 (84.9)

10 (9.4)

4 (3.8)

1 (0.9)

1 (0.9)

e250

Sound

29 (27.4)

77 (72.6)

13 (12.3)

11 (10.4)

4 (3.8)

1 (0.9)

Support and relationships

e310

Immediate family

13 (12.3)

93 (87.7)

7 (6.6)

4 (3.8)

1 (0.9)

1 (0.9)

e320

Friends

25 (23.6)

81 (76.4)

17 (16.0)

5 (4.7)

2 (1.9)

1 (0.9)

e325

Acquaintances peers colleagues neighbours and community members

20 (18.9)

86 (81.1)

14 (13.2)

5 (4.7)

1 (0.9)

0 (0)

e330

People in position of authority

7 (6.6)

99 (93.4)

4 (3.8)

1 (0.9)

1 (0.9)

1 (0.9)

e340

Personal care providers and personal assistance

3 (2.8)

103 (97.2)

2 (1.9)

1 (0.9)

0 (0)

0 (0)

e355

Health professionals

13 (12.3)

93 (87.7)

8 (7.5)

4 (3.8)

1 (0.9)

0 (0)

e360

Health related professionals

8 (7.5)

98 (92.5)

7 (6.6)

1 (0.9)

0 (0)

0 (0)

Attitudes

e410

Individual attitudes of immediate family members

21 (19.8)

85 (80.2)

15 (14.2)

5 (4.7)

0 (0)

1 (0.9)

e420

Individual attitudes of friends

27 (25.5)

79 (74.5)

21 (19.8)

5 (4.7)

0 (0)

1 (0.9)

e440

Individual attitudes of personal care providers and personal assistance

5 (4.7)

101 (95.3)

3 (2.8)

2 (1.9)

0 (0)

0 (0)

e450

Individual attitudes of health professionals

18 (17.0)

88 (83.0)

13 (12.3)

4 (3.8)

1 (0.9)

0 (0)

e455

Individual attitudes of health related professionals

7 (6.6)

99 (93.4)

5 (4.7)

2 (1.9)

0 (0)

0 (0)

e460

Societal attitudes

20 (18.9)

86 (81.1)

15 (14.2)

4 (3.8)

1 (0.9)

0 (0)

e465

Social norms, practices and ideologies

8 (7.5)

98 (92.5)

5 (4.7)

3 (2.8)

0 (0)

0 (0)

15186.png

Table IV. Contd.

ICF checklist code

ICF code description

Total participants linked responses
as affected

n (%)

Not affected

0

Mild

1

Moderate

2

Severe

3

Complete

4

Services system and policies

e525

Housing services, systems and policies

5 (4.7)

101 (95.3)

4 (3.8)

1 (0.9)

0 (0)

0 (0)

e535

Communication services, systems and policies

3 (2.8)

103 (97.2)

2 (1.9)

1 (0.9)

0 (0)

0 (0)

e540

Transportation services, systems and policies

7 (6.6)

99 (93.4)

3 (2.8)

4 (3.8)

0 (0)

0 (0)

e550

Legal services, systems and policies

5 (4.7)

101 (95.3)

4 (3.8)

1 (0.9)

0 (0)

0 (0)

e570

Social security services, system and policies

9 (8.5)

97 (91.5)

6 (5.7)

3 (2.8)

0 (0)

0 (0)

e575

General social support services, systems and policies

4 (3.8)

102 (96.2)

3 (2.8)

1 (0.9)

0 (0)

0 (0)

e580

Health services, systems and policies

12 (11.3)

94 (88.7)

10 (9.4)

2 (1.9)

0 (0)

0 (0)

e585

Education and training services, systems and policies

5 (4.7)

101 (95.3)

3 (2.8)

2 (1.9)

0 (0)

0 (00

e590

Labour and employment services, systems and policies

9 (8.5)

97 (91.5)

4 (3.8)

3 (2.80

1 (0.9)

1 (0.9)

0 = no problem (0–4% of the time); 1 = mild (5–24% of the time); 2 = moderate (25–49% of the time); 3 = severe (50–95% of the time); 4 = complete (> 95% of the time).

All positive responses values over 10% frequencies are highlighted (bold). The 5 categories with highest positive response frequency are printed bold and italicized.

ICF: International Classification of Functioning, Disability and Health.

Impact of brain tumour on the health areas corresponding with ICF chapters (1st level classification)

Fig. 2 shows the total number of participants indicating ‘activity and participation’ restriction, as well as barriers in ‘environmental factors, corresponding with ICF chapters (1st level classification). The most common chapters, in which participants reported problems (sum of qualifiers 1–4) in both domains were: ‘d4’ – mobility (53.8%); ‘d6’ – domestic life (53.3%); ‘d2’ – general tasks and demands (50.9%); and ‘e2’ – natural environment and human made changes to environment (21.7%).

14893.png

Fig. 2. Number of patient (%) in the ICF chapters (1st level classification) (n = 106) for the components ‘Activity and Participation’ (d) and ‘Environmental factors’ (e). Note: Qualifiers are dichotomized to 0 = response 0; and 1 = response 1–4. ICF chapters: ‘Activities and Participation’: d1 = learning and applying knowledge; d2 = general tasks and demands; d3 = communication; d4 = mobility; d5 = self care; d6 = domestic life; d7 =interpersonal interaction and relationship; d8 = major life areas; d9 = community social and civic life. “Environmental factors’: e1 = products and technology; e2 = natural environment and human made changes to environment; e3 = support and relationships; e4 = attitudes; e5 = services system and policies.

Comparisons with the categories of the existing ICF core sets for stroke and TBI

Table V presents the comparison of the ICF categories included in the comprehensive ICF core sets for stroke and TBI with the reported frequency of the problem by the study population according to ICF checklist. Total number of relevant ICF categories in ‘activities and participation’ component identified in brain tumour survivors (44 categories) was less than those in existing ICF core sets for stroke (51 categories) and TBI (61 categories). The categories identified in ‘environmental factors” as relevant by the brain tumour survivors (16 categories) was less than half compared to existing categories in stroke (33 categories) and TBI (39 categories) core sets. There was more commonality between categories identified in brain tumour survivors as relevant (≥ 10% of participant response) with TBI core set than with stroke. In total 56 categories were common between brain tumour and TBI core set, compared to 51 categories between brain tumour and stroke core set. Five additional categories (3 in ‘activity and participation’; ‘d140’ – learning to read, ‘d145’ – learning to write, ‘d150’ – learning to calculate and 2 in ‘environmental factors’: ‘e225’ – climate, ‘e240’ – light) were identified by brain tumour survivors that were not included in either of the TBI or stroke core sets.

Table V. Comparison of ICF core sets for stroke and TBI, and participant report of the impact of brain tumour on health areas for corresponding ICF categories for ‘Activities and Participation’ and ‘Environmental factors

ICF TBI core set code

ICF stroke core set code

ICF checklist code

ICF category description

Total number of participants linked responses as affected

n (%)

Activities and Participation

Learning and applying knowledge

d110

d110

Watchingd

44 (41.5)

d115

d115

d115

Listeninga

44 (41.5)

d140

Learning to readc

17 (16.0)

d145

Learning to writec

19 (187.9)

d150

Learning to calculatec

21 (19.8)

d155

Acquiring skills

d160

d160

Focusing attention

d163

Thinking

d166

d166

Reading

d170

d170

Writing

d172

Calculating

d175

d175

d175

Solving Problemsa

43 (40.6)

d177

Making decision

General tasks and demands

d210

d210

d210

Undertaking a single taska

36 (34.0)

d220

d220

d220

Undertaking multiple tasksa

63 (59.4)

d230

d230

d230

Carrying out daily routinea

55 (51.9)

d240

d240

d240

Handling stress/other psychological demanda

62 (58.5)

Communication

d310

d310

d310

Communicating with – receiving spoken messagesa

21 (19.8)

d315

d315

d315

Communicating with – receiving non-verbal messagesa

20 (18.9)

d325

Communicating with – receiving non-written messages

d330

d330

d330

Speakinga

34 (32.1)

d335

d335

d335

Producing non-verbal messagesa

24 (22.6)

d345

d345

Writing messages

d350

d350

d350

Conversationa

32 (30.2)

d360

d360

Using communication devices and techniques

Mobility

d410

d410

Changing and maintaining body position

d415

d415

Maintain body position

d420

d420

Transferring oneself

d430

d430

d430

Lifting and carrying objectsa

61 (57.5)

d440

d440

d440

Fine hand usea

48 (45.3)

d445

d445

d445

Hand and arm usea

48 (45.3)

d450

d450

d450

Walkinga

56 (52.8)

d455

d455

Moving around

d460

Moving around in different location

d465

d465

d465

Moving around and using equipmenta

44 (41.5)

d470

d470

d470

Using transportationa

53 (50.0)

d475

d475

d475

Drivinga

80 (75.5)

Self care

d510

d510

d510

Washing oneselfa

43 (40.6)

d520

d520

d520

Caring for body partsa

38 (35.8)

d530

d530

d530

Toiletinga

37 (34.9)

d540

d540

d540

Dressinga

41 (38.70)

d550

d550

d550

Eatinga

34 (32.1)

d560

d560

Drinkingd

31 (29.2)

d570

d570

d570

Looking after one’s healtha

40 (37.7)

Domestic life

d620

d620

d620

Acquisition of goods and servicesa

56 (52.8)

d630

d630

d630

Preparation of mealsa

54 (50.9)

d640

d640

d640

Doing houseworka

59 (55.7)

d660

d660

Assisting othersd

57 (53.8)

Interpersonal interaction and relationship

d710

d710

d710

Basic interpersonal interactiona

15 (14.2)

d720

d720

Complex interpersonal interactiond

30 (28.3)

d730

d730

Relating with strangersd

19 (17.9)

d740

d740

Formal relationshipd

15 (14.2)

14927.png

Table V. Contd.

ICF TBI core set code

ICF stroke core set code

ICF checklist code

ICF category description

Total number of participants linked responses as affected

n (%)

d750

d750

d750

Informal social relationshipsa

29 (27.4)

d760

d760

d760

Family relationshipsa

27 (25.5)

d770

d770

d770

Intimate relationshipsa

34 (32.1)

Major life areas

d810

Informal education

7 (6.6)

d820

School education

1 (0.9)

d825

Vocational training

d830

d830

Higher education

10 (9.5)

d840

Apprenticeship

d845

d845

Acquiring, keeping and terminating a job

d850

d850

d850

Remunerative employmenta

55 (51.9)

d855

d855

Non-remunerative employment

d860

d860

d860

Basic economic transactionsa

33 (31.1)

d865

Complex economic transactions

d870

d870

d870

Economic self-sufficiencya

45 (42.5)

Community social and civic life

d910

d910

d910

Community lifea

47 (44.3)

d920

d920

d920

Recreation and leisurea

69 (65.1)

d930

d930

Religion and spirituality

5 (4.7)

d940

Human rights

3 (2.8)

d950

Political life and citizenship

2 (1.9)

Environmental factors

Products and technology

e110

e110

For personal consumption (food, medicines)b

13 (12.3)

e1100

Food

e1101

Drugs

e1108

Non-medical drugs and alcohol

e115

e115

e115

For personal use in daily livingsa

15 (14.2)

e120

e120

e120

For personal indoor and outdoor mobility and transportationa

14 (13.2)

e125

e125

e125

Products for communicationa

11 (10.4)

e135

e135

For employment

e150

e150

e150

Design, construction and building products and technology of buildings for public use

5 (4.7)

e155

e155

e155

Design, construction and building products and technology of buildings for private use

8 (7.5)

e160

Products and technology of land development

e165

e165

Assets

Natural environment and human made changes to environment

e210

e210

Physical geography

e225

Climatec

24 (22.6)

e240

Lightc

16 (15.1)

e250

e250

Soundd

29 (27.4)

Support and relationships

e310

e310

e310

Immediate familya

13 (12.3)

e315

e315

Extended family

e320

e320

e320

Friendsa

25 (23.6)

e325

e325

e325

Acquaintances peers colleagues neighbours and community membersa

20 (18.9)

e330

e330

People in position of authority

7 (6.6)

e340

e340

e340

Personal care providers and personal assistance

3 (2.8)

e355

e355

e355

Health professionalsa

13 (12.3)

e360

e360

e360

Health related professionals

8 (7.5)

Attitudes

e410

e410

e410

Individual attitudes of immediate family membersa

21 (19.8)

e415

Individual attitudes of extended family members

e420

e420

e420

Individual attitudes of friendsa

27 (25.5)

e425

e425

Individual attitudes of acquaintances, peers, colleagues, neighbours and community members

e440

e440

e440

Individual attitudes of personal care providers and personal assistance

5 (4.7)

15045.png

Table V. Contd.

ICF TBI core set code

ICF stroke core set code

ICF checklist code

ICF category description

Total number of participants linked responses as affected

n (%)

e450

e450

e450

Individual attitudes of health professionalsa

18 (17.0)

e455

e455

e455

Individual attitudes of health related professionals

7 (6.6)

e460

e460

e460

Societal attitudesa

20 (18.9)

e465

Social norms, practices and ideologies

8 (7.5)

Services system and policies

e515

e515

Architecture and construction services, system and policies

e525

e525

e525

Housing services, systems and policies

5 (4.7)

e535

e535

e535

Communication services, systems and policies

3 (2.8)

e540

e540

e540

Transportation services, systems and policies

7 (6.6)

e550

e550

e550

Legal services, systems and policies

5 (4.7)

e555

Associations and organizational services, systems and policies

e570

e570

e570

Social security services, system and policies

9 (8.5)

e575

e575

e575

General social support services, systems and policies

4 (3.8)

e580

e580

e580

Health services, systems and policiesa

12 (11.3)

e585

e585

Education and training services, systems and policies

5 (4.7)

e590

e590

e590

Labour and employment services, systems and policies

9 (8.5)

aCorresponding with ICF core set for both stroke and TBI.

bCorresponding with ICF core set for stroke.

cNot corresponding with ICF core set for both stroke and TBI.

dCorresponding with ICF core set for TBI.

All positive responses values (reported by study participants) over 10% frequencies are bolded.

DISCUSSION

To our knowledge, this is the first study to link problems reported by brain tumour survivors with ICF categories in the components of ‘activities and participation’ and ‘environmental factors’ in an Australian cohort. Three different approaches in this study provide a comprehensive assessment of the ICF checklist for brain tumour survivors in a community setting. An open questionnaire approach used ’linkage rules’ to link problems due to brain cancer reported by the participant; an ICF-based approach where each participant rated an ICF-checklist for categories of the components ‘activity and participation’ and ‘environmental factors’ using the WHO qualifier scale; and a comparative approach of participant report with the existing ICF core sets for stroke and TBI.

The participant report of a large number of categories of the ICF checklist reflects the clinical complexity of brain tumours, consistent with other studies (3, 21–23). The demographic and clinical characteristics of the study participants are similar to other reports (21–24). The findings from this study suggest that existing ICF checklists and the comprehensive stroke (10) and TBI (11, 12) ICF core sets incorporate most issues important to primary brain tumour survivors in post-acute settings. This comparison of relevant categories highlights a similar problem profile in brain tumours survivors compared with other neurological conditions affecting the CNS.

The extended ICF checklist incorporates most aspects of life in ‘activities and participation’ domain. Within the checklist majority of categories (88%) were relevant to brain tumour survivors, indicating the range of potential problems in: mobility, domestic life, inter-personal, family and intimate relations, and major life areas (economic self-sufficiency, remunerative employment). The issues identified (driving, recreation, and remunerative employment), reflect socio-demographic characteristics and age distribution of participants (working age, educated, living with family). The relevant categories for mobility (especially for longer distances), public transport, interpersonal relationships, home and community activities are similar to reports in other cancer populations (25, 26). The barriers for ‘environmental factors’ include categories for: support, relationship and attitudes, similar to reports in other neurological populations (27–29). In addition, brain tumour survivors reported sensitivity to light and sound (climate), similar to those with TBI, migraine, myasthenia gravis and Parkinson’s disease (27, 28). The results from this study provide insight into the functioning and health (over a longer-time period), and related contextual factors in this population.

As anticipated, study participants reported difficulty with psychological issues such as ‘handling stress and other psychological demand’, consistent with other studies reporting higher levels of emotional distress, cognitive impairment and alteration in functional status compared with the general population (1, 30, 31). Approximately, 50–80% of patients may show some form of cognitive dysfunction at the time of diagnosis (31), which result in short-term memory loss, reduced concentration, personality changes and mood alteration (32). Further, treatment and/or disease progression itself can also cause a range of neuropsychological sequelae (such as anxiety, depression, stress) (33). More information on adaptation over time and longer term monitoring for neuropsychological sequelae in this population are needed.

Various studies have compared patient reported issues between different neurological conditions using ICF framework (such as Guillain-Barre Syndrome (GBS) and MS (34); Motor Neuron Disease (MND), GBS and MS (35); migraine, myasthenia gravis and Parkinson’s disease (28); “post-acute neurological conditions” (29). However, a recent report compared findings from focus groups of mild TBI with the existing Core Sets for TBI, and found that some frequent patient reported problems were not included within the Brief TBI Core Set (36). These reports suggest commonality and relevance of many ICF categories in the domains ‘activity and participation’ and ‘environmental factors’ for a number of longer-term neurological conditions; and provide information on domains which need to be explored further (e.g. mobility in migraine, genitourinary or sexuality issues in GBS and psychological issues in MND) (29, 34, 35). These findings potentially facilitate further development of a ‘general’ core set for a number of longer-term neurological conditions affecting the CNS, which may allow clinicians to provide targeted intervention and facilitate communication, assessment and management.

Currently commonly used outcome measures in cancer rehabilitation (including brain tumour) do not capture the all relevant complex clinical constructs (37). Generic measures in rehabilitation for brain tumour (and other cancer) populations (e.g. the Functional Independence Measure or Barthel Index) have ceiling effects and do not show change following intervention (37, 38). Similarly, quality of life measures (e.g. Cancer Rehabilitation Evaluation System, Short Form 36), are difficult to measure as many factors impact quality of life; and restriction in activities alone explains only a minor part in the variance (39). A core set for primary brain tumours will guide treating multidisciplinary teams and facilitate clinical care and agreement, and in the future develop an outcome measure through ICF item banking and scale development techniques (40).

This study has some potential limitations. This is a cross sectional survey and does not provide longitudinal information. The sample size is a selective cohort from one tertiary institution of Australian participants. The participants have strict inclusion criteria and are listed on a database held at the RMH and who agreed to participate in research projects. However, the cohort covers a wide geographical population in Victoria, and is representative of the wider sample of brain tumour survivors living in the community. In an attempt to reduce recall bias, all questions were limited in the main to the current situation. Medical records were used only to confirm participant report and no additional information was obtained. The ICF components ‘body structures and functions’ of the core set were not included as they comprised most relevant categories for brain tumour survivors. This study focused on the patient perspective and impact of brain tumour on ‘activities and participation’ and ‘environmental factors’. Interviews were challenging given the fragile emotional and physical status of most participants. Only patient-reported problems were linked to the ICF categories, which is subject to interviewers’ interpretation, however ICF categories linked were consistent with medical information available for participants. This consistency can therefore be interpreted as cross validation of the results. The generalizability and validity of these findings will need to be established in future studies. Participants rated categories contained in the ICF checklist and not those contained within the core sets for stroke and TBI.

Brain tumour rehabilitation is challenging due to high mortality rates, complex physical, psychological and cognitive disabilities and participatory limitations that require an integrated interdisciplinary approach (4). These preliminary findings are a first step towards developing an ICF core set for brain tumours from an Australian perspective, which in the future may assist in facilitating clinical care and agreement, and in development of outcome measurement through ICF item banking and scale development techniques (40). Further, the possibility of a single core set comprising categories relevant to most patients with longer-term neurological conditions that affect the CNS should be explored.

ACKNOWLEDGEMENTS

We would like to thank all brain tumour participants in the study. We thank Dr L. Ng for ethics submission, Ms L. Oscari and Drs I. Rajapaksa & C. Mackenzie for their assistance with interviews and follow-up, and Mr T. Khan for data entry. The above mentioned persons were informed and approve of this acknowledgement.

F. Khan received the Clinical Research Fellowship granted by Victorian Cancer Agency. No commercial party having a direct financial interest in the results of the research supporting this article has or will confer a benefit upon the authors or upon any organisation with which the authors are associated.

The corresponding author has the right to grant on behalf of all authors and does grant on behalf of all authors, an exclusive licence to the Journal of Rehabilitation Medicine.

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