Table 2

Concepts mainly related to the ICF components

Body functions and structures
 Body image and appearance, including weight maintenance/lossb1801, b530
Fatigue, lack of power and motivation, needs rest, slower paceb130, b4552
 Memory functionsb144
Emotional issuesb152
 Affected sex lifeb640
 Impaired speech abilityb310
 Functions of the immune systemb430
 Structure and functions of the skin, ulcersb8, s810
 Impaired tough function, numbness, sensations related to the skin, increased sensibility, loss of sensory functionsb265, b840
Dry mucous membranes, dry mouth, eyes, noseb898, s898
 Affected connective tissueb798, s7703
 Functions and structures of cardiovascular system, enduranceb4, s4
 Breathing problems, coughb4, s4
Blood vessel functions, Raynaud's syndrome, feeling cold in whole body, hands and feet, cold hands, pain in handsb415
Ingestion functions, swallowing problems, dysphagia, mouth too small, problems with oesophagusb510, s510, s520
 Digestive functions, stomach complaints, diarrhoea, bowel problemsb5, b515, s5
 Swelling of body partsb545
 Function and structure of hairb850, s840
 Function and structure of nailsb860, s830
 Heartb410, s4100
 Kidneysb610, b545, s6100
 Pancreasb598, s550
 Gall bladderb598, s570
Lung, bronchiaeb440, s4301, s43010
Stiffness (of muscles, joints, fingers, knees, skin, tendons), cramps, calcificationb710, b715, b8, s810, s770
 Structure, stability and mobility of the (peripheral) joints, such as shoulder or kneeb710, b715, s770
 Structure and functions of movement-related musclesb730, b735, b740, s7702
 Bonesb729, s7700
Activities and participation
 Mobility, including going out when it is coldd4
 Changing and keeping body positionsd410, d415
 Lifting and carrying objectsd430
Impaired hand function related to problems with activities of daily livingd440, d445, d4
 Fine motor skills of the hand, turning, twisting and fumblingd440, d4453
 Use of arm and handd445
 Using public transportationd470
 Driving a card4751
 Eating and drinking, eating dry foodd550, d560
 Applying self-treatment strategies, such as movement, exercise, other strategies to keep hands warm, higher temperature at home, being occupied, drinking during eating helps, stopping to smoke, going to a spa, special shampoo against hair loss, dietd570
 Preparing mealsd630
Household activitiesd640
 Maintaining dwellingd6501
 Caring for children/grandchildrend660
Paid work and productive activitiesd8
 Riding a bicycled4750
 Shopping, entering into cold rooms in supermarketsd6200
 Leisure activities such as sports, skiing, dancing, playing an instrument, listening to music, doing crafts, fishing, doing creative things, singing in a choir, gardeningd920
 Socialising, lonelinessd9205
Environmental (e) and personal factors (PF) in the ICF as well as to the health condition (HC) itself
Drugs and side effects of thesee1101
 Means for keeping warm such as warming pads, gloves, mittense1150
 Hard to find the right clothes that keep warme1150
 Assistive devices, adaptations, adapted car, electronic devicese115
 Infrastructure, such as nearby supermarkets and public transportatione120, e5
 Loss of incomee1650
Climate, cold weather, too much heat, cold in one's flate225, e298
Support of partner, family, relatives, friendse310, e315
 Support of other people with diseasese325
 Support of colleaguese325
 Support of employerse330
 Support of personal assistante340
 Support of strangerse345
 Support of petse350
 Support of health professionals specialised for SSce355
 Attitudes of family memberse410
 Attitudes of strangerse445
 Attitudes of friendse420
 Attitudes of colleaguese425
 Attitudes of employerse430
 Attitudes of health professionals, such as a lack of understanding, needing to go to a private practice and pay for the servicee450
 Employers' policiese
Experiences with healthcare institutions, including negative experiencese450
Non-pharmacological treatment, wax bath, treatment of dentists, treatment of occupational therapists, treatment of physiotherapists, (treatment in) healthcare institutions, social security system, benefitse5
Positive experience of the disease, being in control, being strong owing to having mastered the disease, positive attitude towards diseasePF
Struggle to master one's life with the disease, such as unclear future, unclear outcome, needing to compromise, change of expectationsPF
 Changing the way of doing things, adapting daily activities to own abilitiesPF
 Mental and physical exhaustion, impaired fitness as referring to the current individual state of the bodyPF
 Own attitudes towards SSc, towards being ill, towards accepting help, towards drugs, feeling guilt towards partners, family members and children, not viewing oneself as ill, focusing on what one can doPF
 Gender-specific differences: losing hair is terrible for a woman, change of gender roles in relationshipsPF
 Course of the diseaseHC
  • Higher level concepts which relate to ICF categories are described in the tables ordered by ICF component. Lower-level concepts are not shown in the tables. Concepts that emerged in all four countries are marked in bold. ‘A’ refers to Austria, ‘R’ to Romania, ‘S’ to Sweden and ‘CH’ to Switzerland. ‘b’ categories are included in the ICF component body functions, ‘s’ are body structures, ‘d’ activities and participation and ‘e’ environmental factors.

  • A, Austria; CH, Switzerland; R, Romania; S, Sweden.

  • ICF, International Classification of Functioning, Disability and Health; SSc, systemic sclerosis.