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 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) |
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 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 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) |
||
|
Table IV. Contd. |
|||||||||
|
ICF checklist code |
ICF code description |
Total participants linked responses 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%).
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) |
|
|
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) |
|
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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