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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

From: Elicitation of health state utilities associated with varying severities of flares in Systemic Lupus Erythematosus

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
  1. CNS- Central nervous system, HS-Health state