Introduction
Methods
Study design
Delphi study
Composition of the expert panels
ICF categories
Delphi procedure
Data analysis
Validation study
Questionnaire selection
Linking procedure
Results
Delphi procedure
Expert panels
Lung cancer I II | Colorectal cancer I II | Breast cancer I II | Total expert panel I II | |||||
---|---|---|---|---|---|---|---|---|
Subpanel—lay expertsa
| ||||||||
Lay expert | 13 | 10 | 10 | 8 | 21 | 12 | 44 | 30 |
Subpanel—medical experts | ||||||||
Physician | 3 | 2 | 9 | 5 | 5 | 5 | 17 | 12 |
Nurse practitioner | 4 | 4 | 2 | 2 | 3 | 3 | 9 | 9 |
Subtotal | 7 | 6 | 11 | 7 | 8 | 8 | 26 | 21 |
Subpanel—other healthcare workers | ||||||||
Oncology nurse | 9 | 7 | 4 | 3 | 3 | 3 | 16 | 13 |
Psychologist | 1 | – | – | – | 1 | 1 | 2 | 2 |
Dietician | 1 | 1 | 1 | 1 | – | – | 2 | 2 |
Social worker | 1 | 1 | 1 | 1 | 2 | 1 | 4 | 3 |
Physical therapist | – | – | 1 | 1 | 6 | 5 | 7 | 5 |
Subtotal | 12 | 9 | 7 | 6 | 12 | 10 | 31 | 25 |
Total | 32 | 25 | 28 | 21 | 41 | 30 | 101 | 76 |
ICF category sampling
ICF component | ||||
---|---|---|---|---|
Body functions and structures
n (%) | Activities and participation
n (%) | Environmental factors
n (%) | Total
n (%) | |
Number of initial categories in the ICF | 119 (45) | 82 (31) | 64 (24) | 265 (100) |
Delphi round I selection | ||||
Very relevant | 4 (19) | 10 (48) | 7 (33) | 21 (100) |
Relevant | 55 (39) | 53 (38) | 32 (23) | 140 (100) |
Delphi round II selection | 4 (22) | 8 (44) | 6 (33) | 18 (100) |
Validation study
Selected questionnaires
Questionnaire | Negative domains | Number of negative items | Positive domains | Number of positive items | Number of items to be linked |
---|---|---|---|---|---|
QLACS | Cancer specific 1. Appearance concerns 2. Financial problems 3. Distress over recurrence 4. Family-related distress Quality of life 1. Negative feelings 2. Cognitive problems 3. Sexual problems 4. Physical pain 5. Fatigue 6. Social avoidance | 4 4 4 3 4 4 4 4 4 4 | Cancer specific 1. Benefits of cancer Quality of life 1. Positive feelings | 4 4 | 39 |
DT/PL | Generic domains 1. Practical problems 2. Family/social problems 3. Emotional problems 4. Religion/spiritual concerns 5. Physical problems | 7 3 10 2 25 | None | 0 | 47 |
IOCv2 | Negative impact scale 1. Appearance concerns 2. Body changes 3. Life interferences 4. Worry Additional subscales 1. Employment concerns 2. Relationship concerns | 3 3 7 7 3 7 | Positive impact scale 1. Altruism and empathy 2. Health awareness 3. Meaning of cancer 4. Positive self-evaluation | 4 4 5 4 | 30 |
Items linkable to the ICF categories in the initial Core Set
ICF category | Lung cancer (%)a
| Colorectal cancer (%)a
| Breast cancer (%)a
| QLACSb
k = 39 | DT/PLb
k = 47 | IOCv2b
k = 30 | |
---|---|---|---|---|---|---|---|
Body functions and structures | |||||||
Mental functions | |||||||
b130 | Energy and drive functionsc
| 33 | 57 | 50 | – | – | – |
b140 | Attention functions | 83 | 86 | 75 | 2 | 1 | – |
b152 | Emotional functions | 100 | 100 | 100 | 13 | 6 | 11 |
Sensory functions and pain | |||||||
b280 | Sensation of pain | 100 | 71 | 100 | 4 | 1 | – |
Genitourinary and reproductive functions | |||||||
b640 | Sexual functions | 83 | 86 | 100 | 4 | 1 | – |
Activities and participation | |||||||
Learning and applying knowledge | |||||||
d166 | Readingd
| 68 (70) | 76 | 70 | – | – | – |
d177 | Making decisions | 88 | 81 | 83 | – | – | 1 |
General tasks and demands | |||||||
d240 | Handling stress and other psychological demands | 100 | 95 | 93 | – | – | – |
Mobility | |||||||
d475 | Drivingd
| 84 | 71 | 67 (82) | – | – | – |
Self-care | |||||||
d570 | Looking after one’s healthd
| 100 | 86 | 83 | – | – | 1 |
Interpersonal interactions and relationships | |||||||
d710 | Basic interpersonal interactionsd
| 88 | 81 | 83 | 3 | – | 1 |
d720 | Complex interpersonal interactionsd
| 76 | 86 | 80 | 2 | 3 | 8 |
Major life areas | |||||||
d870 | Economic self-sufficiencyd
| 100 | 86 | 83 | 3 | 1 | – |
Environmental factors | |||||||
Products and technology | |||||||
e310 | Immediate family | 100 | 95 | 100 | – | 1 | – |
e320 | Friends | 100 | 91 | 97 | – | – | – |
e355 | Health professionals | 96 | 100 | 90 | – | – | – |
Attitudes | |||||||
e410 | Individual attitudes of immediate family membersd
| 64 (70) | 71 | 77 | – | – | – |
Services, systems, and policies | |||||||
e570 | Social security series, systems, and policiesd
| 88 | 86 | 97 | – | – | – |
e580 | Health services, systems, and policiesd
| 96 | 91 | 100 | 1 | 1 | 1 |
Items linked to other ICF categories | – | – | – | 6 | 5 | 7 | |
Nonlinkable items | – | – | – | 1 | 1 | 1 | |
Short-term items | – | – | – | 0 | 26 | 0 |