Primary immunodeficiency Haematological Disorders
Conditions
Interventions
The study will employ a cross-sectional and cohort design, examining the current functioning of adult patients who underwent HSCT during childhood and comparing it with healthy controls and population
Sponsors
Royal Free Hospital
Eligibility
Sex/Gender
All
Inclusion criteria
Inclusion criteria: 1. All patients aged 16 and over who have had an HSCT at Great Ormond Street Hospital five years or more previously 2. Patients with learning difficulties, who have low levels of literacy or limited verbal communications skills will be supported by family members or carers to complete as much of the assessment pack as possible. All potential participants are known to the clinical team and, if able to communicate verbally, speak good English.
Exclusion criteria
Exclusion criteria: Participants not fulfilling the inclusion criteria
Design outcomes
Primary
| Measure | Time frame |
|---|---|
| 1. Physical functioning, measured using the SF-36 PCS at baseline 2. Psychological functioning, measured using the SF-36 MCS at baseline | — |
Secondary
| Measure | Time frame |
|---|---|
| 1. Anxiety, measured using the GAD-7 at baseline 2. Depression, measured using the PHQ-9 at baseline 3. Physical health, measured using the Inventory of Health Status at baseline 4. Health service usage, NHS costs, and costs borne by patients and families, measured using a self-developed questionnaire at baseline | — |
Countries
England, United Kingdom
Outcome results
None listed