Table 4.

HRQoL domains and sub-domains

Domain	Sub-domain	Description
Activities	1. Activities of daily living	Day-to-day activities (e.g. feeding, opening items, gripping objects, writing, problems with toileting).
	2. Communication / speech	Speech and verbal communication problems.
	3. Enjoyable or meaningful activities / roles	Sports participation, ability to participate in or impact of health on: activities, school, school work or work.
	4. Hearing	Hearing problems or difficulties.
	5. Mobility	Climbing stairs, walking, running, getting in/out of bed, endurance (walking a distance or at speed), lifting, joint fluidity and range, using mobility devices, standing from sitting.
	6. Self-care	Getting dressed, personal hygiene.
	7. Sexual functioning	Sexual function / interest in sex & satisfaction in sex life.
	8. Vision	Visual problems or difficulties.
Physical sensations	1. Breathing	Breathing difficulties, wheezing, breathing aids used, breathlessness.
	2. Eating, appetite, dribbling and swallowing	Eating problems, appetite, dribbling, swallowing.
	3. Fatigue, tiredness and physical weakness	Physical fatigue, lack of energy, tiredness, feeling weak and muscle weakness, exhaustion, worn out.
	4. Pain & discomfort	Pain, discomfort, bloating, dizziness & light headedness, skin problems, joint stiffness swelling, tingling / burning sensation.
	5. Sleep / sleep problems	Sleep / sleep issues.
	6. Symptoms	Digestive problems, changes in appearance (e.g. weight loss or gain and skin changes), sweating, vomiting / nausea.
Autonomy	1. Control / choice	Control / lack of control.
	2. Coping	Ability to cope.
	3. Autonomy / independence	Autonomy, independence.
Cognition	1. Concentration	Concentration and in/attention.
	2. Memory	Memory / forgetfulness.
	3. Thinking clearly & decision making	Thinking clearly, decision making, confusion.
	4. Understanding	Understanding situations and conversations.
Feelings & emotions	1. Anger, frustration & irritability	Anger, tempter, irritability, restlessness, agitation, frustration (e.g. with situation or symptoms), violence.
	2. Guilt / shame	Feelings of guilt or shame.
	3. Hopeless / hope	Pessimism and optimism e.g. about future, hope / hopeless.
	4. Psychological fatigue & energy	Lack of energy or motivation, psychological fatigue.
	5. Sadness (depressed) / happiness	Episodes of crying, self-harm and suicidal thoughts, depression, happiness and sadness.
	6. Vulnerable / safe	Feeling un/safe, vulnerable.
	7. Wellbeing & life satisfaction	Wellbeing positive concepts e.g. enjoyment of life, life satisfaction, enthusiasm, meaningful life.
	8. Worry, anxiety fear & calm	Worry, scared and fearful, anxiety, nervousness, panic, separation anxiety, calm.
Self-identity	1. Treated with dignity / respect	Perceptions - treated with dignity / respect.
	2. Self-worth, self-respect and self-confidence	Feeling accomplishment or failure, self-confidence, self-loathing or hatred, worth/ worthlessness, self-esteem, body image / comfort with body, self-consciousness, embarrassment.
Relationships	1. Belonging & connectedness	Feeling understood / accepted, feeling included / excluded.
	2. Burden	Burden to others.
	3. Loneliness	Loneliness.
	4. Relationships & friendship	Makes/ has or unable to make friends, impact of health (positive or negative) on relationships / socialising (inc. friends, family), dis/satisfaction with relationships.
	5. Social engagement	Interest in other people, interest in participation or socialising.
	6. Support	Emotional help and support / bonds.