Table 3.

Domains of QoL important to participants with hand osteoarthritis (HOA)

Domains under broad categories	Subthemes	Sample quotations from focus group discussions	Coverage by existing instruments
			FIHOA	M‐SACRAH	AUSCAN	HAQ‐DI
A. Symptoms
Pain	Specific description of pain	‘digging into my bone’ [AU/F/67/Chi, FG1]; ‘being pricked by needles’ [ML/F/71/Chi, FG3]; ‘stabbing pain’ [T/M/52/Chi, FG5]; ‘sharp’ [J/M/62/Chi, FG5]; ‘throbbing’ [J/M/62/Chi, FG5]
	Description of intensity of pain	‘numbness’ [P3/F/71Chi, FG4]; ‘tingling’ [RO/F/72/Chi, FG1]; ‘quite severe’ [RO/F/72/Chi/FG1]; ‘very intense’ [MM/F/65/Chi, FG3]
	Pain affecting hand movement	‘It is best to do nothing, then there will be no problem.’ [Kit/F/55/Chi, FG7] ‘If you use your finger or thumb to apply pressure when you do certain things, then the pain usually increases.’ [J/M/62/Chi,FG5]	x	x	x
	Pain affecting hand strength and work			x	x
Stiffness	Stiffness affecting finger/hand movement		x	x	x
Swelling	Description of swelling, big, fat, red, warmth	‘very red, very swollen’ [MA/F/78/Chi, FG1]
	Bones become big, boggy. Hard lump around the fingers	‘The centre bone here is bulge out, you see, swollen.’ [ST/F/59/Chi, FG7]
Variation or fluctuation of symptoms with time/environment/motion/mood	Worsens with time of the day, morning, weather, environment, cold water, food/diet	‘my fingers in the morning are very stiff’ [RO/F/72/Chi,FG1] ‘The humidity is high; this part of my hand is very swollen.’ [MA/F/78/Chi,FG1] ‘During rainy days, the joints will be painful.’ [G/F/61/Chi,FG4] ‘It tends to be quite accurate to predict the weather with your pain’ [AU/F/67/Chi,FG1] ‘I try my best not to touch water, the hands like cannot close, cannot bend.’ [E/F/56/Chi,FG4] ‘Cooling things may cause a flare up, ginseng tea, even green bean soup.’ [T/M/52/Chi,FG5]		x	x
	Worsens with motion/movement	‘It can come especially if you grip something or rinse.’ [PC/M/78/Chi,FG5]
	Worsens with mood	‘Sometimes when I am upset, I do get more pain.’ [MA/F/78/Chi,FG1]
B. Limitations in activities
B1 Daily activities	I have problems writing		x	x
	I have difficulties in carrying		x		x	x
	I have problems driving	‘Sometimes, I was so afraid that halfway, you know, I may give way the steering wheel.’ [RO/F/72/Chi,FG1]
	I cannot grip, pinch, hold things continuously		x		x	x
	I cannot open jars, bottled drinks		x	x	x	x
	I have difficulties in opening packaging	‘Three‐in‐one coffee [is] difficult to tear off.’ [P1/F/59/Chi,FG2]
	I cannot wring towels or clothes properly	‘I cannot fully wring dry a towel, I squeeze only 75%.’ [P1/F/59/Chi,FG2]			x
	Hand is clumsy, loss of agility, I drop things	‘I have actually broken cups’ [ST/F/59/Chi,FG7] ‘I cannot take the change from the table.’ [P1/F/59/Chi,FG2]
	I have difficulties in doing housework, including shopping for groceries, preparing meals, doing laundry and cleaning the house	‘I find [it] difficult, when my hands swell, to turn your food as you fry. We Chinese like the wok frying and you really have to turn a lot so that's the difficulty.’ [AU/F/67/Chi, FG1]				x
	I have problems in using tools, small gadgets.		x	x
	I have to slow down when doing things	‘Doing the housework is much slower than before.’ [P3/F/71/Chi, FG2]
	I cannot wear my jewellery	‘I have occasion to wear my bracelet, I couldn't do it.’ [MA/F/78/Chi, FG1] ‘Because of the swelling I cannot remove my rings. Even with soap.’ [AU/F/67/Chi, FG1] ‘I can't wear rings. Because all the knuckles are all very big’ [P3/F/71/Chi, FG2] ‘It's difficult to wear the ring, the ones with a pearl or what[ever]. It will turn to the inside; this makes me angry.’ [MM/F/65/Chi, FG3]			x
	I have difficulties in self‐care, including brushing teeth, cleansing after toileting, wiping body dry after bathing	‘The jeans, cannot zip up and button after toilet’ [J/M/62/Chi, FG5] ‘When I am brushing my teeth, it really pulls. It is very thick tension.’ [PC/M/78/Chi, FG5]				x
	Problem with dressing, including buttoning (clothes), pulling up (pants), zipping up (pants), fastening or tying shoelace.	‘Sometimes I don't even button, I tie up with a belt’ [T/M/52/Chi, FG5] ‘Buttoning your shirt can be a real problem.’ [J/M/62/Chi, FG5] ‘All the small actions, like buttoning yourself, zipping, you know, all these require your thumb. You cannot do with the other fingers.’ [J/M/62/Chi, FG5] ‘I don't like to wear lazy man shoes actually but I have to now. I like to wear lace, but I cannot take care of the knot.’ ‘I also cannot fasten my bra’ [MA/F/78/Chi, FG1]	x	x	x	x
	I have difficulties in using cutlery	‘Half way eating, I have to put the chopsticks on the table rest my hand.’ [P1/F/59/Chi, FG2] ‘Still can eat with the hands, but here pain here pain’ [N/F/58/Mal, FG6]				x
	I have problems using electronic devices	‘Have difficulties in doing some typing, entering data’ [ST/F/59/Chi, FG7]
	It affects my religion/ritual practices	‘Muslim prayers have to do movements; I cannot push myself up from the floor.’ [K/F/73/Mal, FG6]
	I need to change the ways of doing things, change of work flow, etc.	‘I couldn't fasten the bra, so I buy bra that's fasten in front’ [P3/F/71/Chi,FG3] ‘For cleansing window, I will open the windows when it rains and let it wet’. [Sh/F/60/Chi,FG3] ‘I change to the electrical tooth brush, and then you hold this way. Helps a lot.’ [T/M/52/Chi,FG5] ‘Squeezing also cannot, so I have to hang it dry, all these things.’ [Kit/F//Chi, FG7] ‘like cooking, only eat light but not so heavy things, you have to distribute your work’ [Sh/F/60/Chi, FG3]
B2. Leisure activities	I cannot do things I enjoyed doing	‘I like to surf the net and so it's quite miserable.’ [Au/F//Chi, FG1] ‘In doing flower arrangement, I cannot get what I want, I always break the plant.’ [P3/F/71/Chi, FG2] ‘I like to cook. Basically I stop doing [it] because opening jars is difficult and washing pots and pans become quite heavy. I try not to stress the joints’ [T/M/52/Chi, FG5] ‘I love sewing, patchwork, embroidery work. It affected very lot. Even handicraft work [I] also cannot do.’ [FL/F/69/Chi, FG7]
C. Impact on psychological well‐being
I feel frustrated		‘Sometimes I cannot even open the cap. I have to ask others for help. Feel very frustrated.’ [A/F/62/Chi, FG4] ‘You can't even hold a needle now that's very frustrating.’ [MA/F/78/Chi, FG1] ‘I also cannot fasten my bra. It is very frustrating [MA/F/78/Chi, FG1]
I become irritable, impatient, and I loose temper easily		‘I get very annoyed and on reflection I feel very bad.’ [MA/F/78/Chi, FG1] ‘All these minor, minor problems irritate me.’ [FL/F/69/Chi, FG7]
I feel sad, downhearted, depressed		‘In the first few years, I really want to jump down the building, it was very miserable.’ [J/F/58/Chi, FG3] ‘Ah pain and I cannot do everything I do, everyday all I cannot do, one day I really feel to go down from the window’ [N/F/58/Mal, FG6]
I feel helpless, loss of control		‘I have to take care of him, my hands are also painful. I have to take care of another patient, I am a patient myself’ [J/F/58/Chi, FG3]
I feel guilty		‘[It] makes me feel very guilty because I get angry with him for not able to help me’ [MA/F//Chi, FG1]
I feel not being understood, other people do not understand what I am suffering		‘Just suffer in loneliness or suffer in silence’ [Ro/F//Chi, FG1] ‘They don't understand our problem you know. They do not see the severity.’ [P3/F/71/Chi, FG2] ‘They will think that you are trying to catch their attention.’ [P4/F/59/Chi,FG2] ‘Because it will not bleed, it's also not some serious illness, it's no meaning if you keep talking about it (the pain).’ [MM/F/65/Chi,FG3] ‘It's like this pain, own‐self pain’ [MM/F/65/Chi,FG3] ‘Even the doctors themselves felt that hand OA is not a problem’ [J/M/62/Chi,FG5]
I feel embarrassed		‘Very embarrassing that you drop things’ [RO/F/72/Chi,FG1] ‘In the supermarket, cannot take the plastic bag, open it, it's quite embarrassing’ [P2/F/56/Chi,FG2]
I am concerned about the look of the fingers and the aesthetic changes; it affects my self‐confidence and self‐esteem; I feel older than my age, it reminds me of ageing		‘It is embarrassing. In front of your friends, when you eat, they are looking at your ugly fingers.’ [P3/F/71/Chi,FG2] ‘They are getting crooked, in the future maybe it will look very ugly we can't help it.’ [AU/F/67/Chi,FG1] ‘In that sense that why the mind is younger but the body is not.’ [AU/F/67/Chi,FG1] ‘Sometimes when I want to dress up for occasion, your clothes look quite nice and new, but your fingers are quite old that kind of feeling’ [MA/F/78/Chi,FG1] ‘But if you look at my hands, my hands shows my age you know’ [P3/F/71/Chi,FG2] ‘They are very ugly, not even pretty when wearing rings’ [A/F/62/Chi,FG4]
I worry (about the current condition, worry that it gets worse)		‘I'm just worried that eventually all my other eight fingers will also become crooked.’ [P4/F/62/Chi,FG2] ‘I'm worried that my thumb will be totally deformed that I cannot use.’ [FL/F/69/Chi,FG7]
I worry about losing independence		‘Then I know I will eventually need one [maid] but that frightens me’ [MA/F/78/Chi,FG1] ‘When I am older, do I need my children to help me, do I need people to bath me? That is a suffering for me.’ [A/F/62/Chi,FG4]
D. Impact on social role/participation
I cannot fulfil the family role, or social role		‘I am afraid if I carry her [granddaughter], I might drop her.’ [MA/F/78/Chi,FG1] ‘I have to force myself to fold in my thumb to carry my grandchildren up’ [FL/F/69/Chi,FG7] ‘It's difficult for me to help them retrieve their toys and the child doesn't understand you. He wants grandma to do it and not someone else.’ [AU/F/67/Chi,FG1] ‘My wife automatically hands [over] heavy things to me to carry, and I have to carry.’ [PC/M/78/Chi,FG5] ‘Because I didn't cook their [grandchildren] favourite curry. I cannot stand long then my hands also cannot wash. So they didn't come, never come.’ [K/M/73/Chi,FG7]
I am unable to take part in social activities I want to		‘Last time got so many friends; 1 week three times we go to mosque. Now like no heart to go, no heart to make friends’ [N/F/58/Chi,FG6] ‘I used to enjoy shopping with friends, now I cannot walk, my hands cannot carry things. I don't want to trouble people, so I try not to go.’ [N/F/58/Chi,FG6] I used to have a lot of friends, now I don't attend those activities, will more or less lose contact, like lose some friends [A/F/62/Chi,FG4]
My mood is affecting the relationship with relatives and friends		‘When the pain [is] coming, I don't let people talk to me. I want to stay myself only.’ [N/F/58/Mal,FG6]
Impact on work productivity; including quitting job, changing job, changing the nature of work, absentees from work, reduced work performances, cannot perform activities/provide services that can make money		‘Last time sold people baju [traditional clothing], make money you know a lot of money. Now cannot.’ [K/F/73/Mal,FG6] ‘To me, the impact is very big, at least I cannot work.’ [Sh/F/60/Chi,FG3] ‘Work productivity is affected. Usually, they will want you to be fast, then how to be fast? Cannot! They have target deadline on this thing.’ [Kit/F/55/Chi,FG7] ‘It's so swollen and big and painful that you cannot even work, you cannot use that finger as a reason to take medical leave. Then I ask my subordinates to work on the heavier duties.’ [Sh/F/60/Chi,FG3]