Figure 1.
Figure 2.
Literature review search strategy Databases searched included Embase 1996 to 2020 Week 50, MEDLINE® 1946 to 16 December 2020, and PsycINFO® 2002 to December Week 1 2020_
| STEP | SEARCH TERMS | SEARCH TYPE | HITS |
|---|---|---|---|
| 1. | H?emophilia* or Christmas disease or factor IX deficien* or FIX deficien* | All fields | 76,045 |
| 2. | joint bleed* or microbleed* or asymptomatic bleed* or synovial bleed* or silent bleed* or subclinical bleed* or h?emophilic arthropathy or h?emarthtro* or joint pain | All fields | 32,949 |
| 3. | symptom* or impact* or daily activit* or QOL or health related quality life or HRQOL or activit* daily living or ADL | All fields | 6,918,773 |
| 4. | Qualitative or (focus ADJ group)* or interview* or patient report* or self report* or parent report* or caregiver report* or CareRO or observer report* or ObsRO or P?ediatri* or adolescen* | All fields | 8,836,985 |
| 5. | (1) AND (2) AND (3) AND (4) | - | 514 |
| 6. | Limited to English language | - | 500 |
| 7. | Limit to full text | - | 198 |
| 8. | Limited to Human | - | 177 |
| 9. | Limit to last 10 years ("2010-Current") | - | 147 |
| 10. | Duplicates removed | - | 122 |
j_jhp-2024-0014_tab_004
| AGE (YEARS) | NUMBER OF CHILDREN WITH MILD, MODERATE, OR SEVERE HAEMOPHILIA | ||
|---|---|---|---|
| NONE | ONE | TWO OR MORE | |
| 7 or younger | Screenout | Screenout | Screenout |
| 8 to 17 | Screenout | Proceed | Proceed |
| 18 or older | Screenout | Screenout | Screenout |
Advisory board participant information (N=8)
| ROLE | WORK SETTING | EXPERIENCE |
|---|---|---|
| Consultant Haematologist (#1) (Adults) | CCC; haemophilia database; HaemTrack | Experience working with young people with haemophilia B that have transitioned into adult services |
| Consultant Haematologist and Centre Director (Adults and Children) (#2) | CCC | Experience working with adults and children with haemophilia |
| Haemophilia Nurse Specialist (Children) (#3) | CCC; haemophilia database review group | Significant experience working with children with haemophilia |
| Haemophilia Nurse Specialist (Children) (#4) | CCC | Significant experience working with people with haemophilia, both adults and children |
| Clinical Specialist Physiotherapist in Haemophilia (Adults) (#5) | CCC; HCPA | Significant clinical and research experience |
| Clinical Specialist Physiotherapist in Haemophilia (Children) (#6) | CCC | Significant clinical and research experience |
| Clinical Specialist Physiotherapist in Haemophilia (Adults) (#7) | CCC | Significant clinical and research experience |
| Paediatric and Adolescent Rheumatologist and Senior Clinical Lecturer (#8) | Rheumatology clinic for adolescents and university centre for musculoskeletal research | Significant experience researching PRO measures and patient-reported experience measures, working with adolescents with musculoskeletal complaints in their clinical practice |
Focus group participant information (N=12)
| HEALTHCARE PROFESSIONAL | YPWHB (AGE) | HAEMOPHILIA SEVERITY | PARENT (N) |
|---|---|---|---|
| Group 1 | |||
| Clinical psychologist | 9 years* | Moderate | 1 |
| 10 years | Moderate | 1 | |
| 10 years | Mild | 1 | |
| 11 years | Mild | 1 | |
| Group 2 | |||
| Physiotherapist | 14 years | Severe | 1 |
| 21 years | Severe | ||