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 |