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Table 1 Final list of attributes, levels, and data sources

From: Co-production of randomized clinical trials with patients: a case study in autologous hematopoietic stem cell transplant for patients with scleroderma

Attribute

Levels

Sources/references

Years after treatment without further scleroderma organ damage

1. 1 year (opt-out level)

Expert opinion (clinician); Sullivan et al. [18]

2. 2 years

3. 5 years

4. 10 years

Immune suppression treatment and risk of immediate complications

1. No additional risk of immediate complications (opt-out level)

Carreras et al. [26]

2. Chemotherapy; risk of complications which could lead to death: 10% (10 in 100)

3. Low dose chemotherapy and full body irradiation; risk of complications which could lead to death: 5% (5 in 100)

4. Low dose chemotherapy and targeted irradiation; risk of complications which could lead to death: 2.5% (2.5 in 100)

Late complications (i.e., cancer)

1. No additional risk of late complications (opt-out level)

Refs [26,27,28,29]

2. Risk of late complication from treatment (e.g., cancer) in the future: 5% (5 in 100)

3. Risk of late complication from treatment (e.g., cancer) in the future: 10% (10 in 100)

4. Risk of late complication from treatment (e.g., cancer) in the future: 20% (20 in 100)

Team care (in addition to the standard medical care)

1. No additional team members (opt-out level)

Qualitative work

2. Extended medical team: rheumatologist, hematologist, cardiologist, respirologist, nurse

3. Multidisciplinary care: extended medical team + allied health professionals to provide mental, wellbeing and nutritional support

Number of people with scleroderma the hematologist has treated using AHSC treatment

1. No information (opt-out level)

Qualitative work/expert opinion (patient/clinician)

2. Less than 5 patients

3. 5 or more patients

Additional cost to you (expenses not covered by the provincial health plan, nor your health insurance)

1. No additional costs (opt-out level)

Qualitative work/expert opinion (patient)

2. $0–$1,000

3. $1000–$5000

4. $5000–$10,000

Additional distance of treatment center to your home

1. 0 km (opt-out level)

Qualitative work/expert opinion (patient)

2. Between 50 and 300 km

3. Between 300 and 1000 km

4. More than 1000 km