Table 1.

A sample of patient quotes used to inform the development of the health states and a brief description of the symptoms and impacts included in each health state

Health state	Symptoms	Brief description of impact	Patient quotes
Anchor	Mild joint pain	Mild joint pain, minimal impact on mobility	“It’s frustrating, people don’t think you are ill”
	Sensitive skin	Sensitive skin may impact usual activities as must minimise exposure to the sun
	Mild fatigue	Fatigue may impact usual activities i.e. change plans with friends	“If I do something [go out, exercise], I know everything will be worse the next day”
		Feeling frustrated
Mild	Moderate joint pain	Moderate joint pain, unable to walk long distances, some difficulty with dexterity e.g. opening jars	“It takes a while for my joints to get moving, everything takes longer”
	Prominent rash and patchy hair loss	Self-conscious of rash and hair loss	“I can’t walk for more than 45minutes- I get too tired”
	Moderate fatigue	Fatigue may impact usual activities i.e. leave work early
		Feeling worried
Moderate	Swollen, tender joints	Severe joint pain, difficulty standing and walking i.e. require aid getting in and out of the shower	“I hate for my family to see me struggle, I feel like a burden”
	Prominent rash and considerable hair loss	Pain when eating	“pain from head to toe, every bone”
		Chest pain disturbs sleep
	Mouth ulcers	Fatigue may impact on usual activities i.e. take time off work	“Someone has taken your body and replaced it with an old body”
	Chest pain	Frequent blood and urine tests required
	Severe fatigue	Medication is increased causing weight gain and nausea
	Hematological	Feeling anxious and depressed
Severe generalised	Joint pain is all over	Very severe joint pain, impossible to get comfortable	“I am so tired its debilitating, I have to be carried to the bathroom”
	Flaky rash which may scar and considerable hair loss	Eating and swallowing is unbearably painful	“[You feel like] is this ever going to end”
	Mouth ulcers	Finger ulcers are painful and must be dressed regularly by a nurse
	Finger ulcers	Chest pain makes lying down uncomfortable and disturbs sleep
	Sharp chest pain and shortness of breath	Severe fatigue impacts usual activities i.e. stay in bed all day, require carrying to the toilet
	Severe fatigue	Admission to hospital for several days
	Hematological	Frequent blood and urine tests required
		Medication is increased causing weight gain and nausea
		Long-term monitoring for diabetes, heart attack, stroke and fractures
		Signed-off work for weeks
		Feeling anxious and depressed
Severe CNS	Memory loss	Feeling disorientated and confused	“It feels like my brain has gone through a cheese grater, I can’t speak, I can’t concentrate, I get confused”
	Blurred vision	Admission to hospital for several days	“People think you are stupid”
	Seizures	Investigative procedures including neurological tests and MRI scans
	Plus the symptoms	Medication is increased causing weight gain and nausea
	outlined for the	Seizures may impact on usual activities i.e. being unable to drive
	mild HS	Loss of independence
		Possibility of permanent mental damage
		Signed-off work for weeks
		Plus the impacts outlined for the mild HS
Severe Renal	Swollen legs	Admission to hospital for several days	“I have to work around hospital appointments, work are accommodating- I don’t know how long this will last”
	Severe headache	Require a kidney biopsy
	Signs of kidney dysfunction	Immunosuppressant’s to help prevent kidney failure
	Plus the symptoms outlined for the mild HS	Return to hospital monthly for more tests
		Possibility of kidney failure and dialysis
		Signed-off work for weeks
		Plus the impacts outlined for the mild HS

CNS- Central nervous system, HS-Health state