Most of the research investigating outcomes following HSCT for IEI has focused on physical outcomes and there has been little assessment of psychosocial measures. Whilst quality of life is referred to [
14‐
16,
19‐
22], specific standardized measures were generally not used and there was a low threshold for “good” quality of life (e.g., being alive and/or attending school). Seven studies examined psychosocial outcomes and/or quality of life for patients who underwent HSCT for IEI [
7,
23‐
28]. Four of these looked at short-term follow-up in children and only three were limited to patients with IEI. The results indicated some emotional and social difficulties and a long-term impact on quality of life, with variation according to original diagnosis [
23,
24,
26,
27]. A fifth study [
25] examined late outcome in adult survivors of childhood HSCT, but less than 25% of their sample were patients with IEI (specific number and diagnoses not provided). The final two studies [
7,
28] indicate that quality of life is within the normal range for patients who are no longer on immunoglobulin therapy; however, whilst some of their participants were adults, the median age at follow-up was 15 years and the studies used a predominantly child measure to assess quality of life. The pediatric literature shows that there are outcome differences between patients transplanted for IEI and other diagnoses [
29] and between patients with different IEIs [
27]. We have not identified any studies examining quality of life solely in adult survivors of HSCT for IEI. Within the HSCT population as whole, problems with sleep, energy levels or fatigue, sexual functioning, memory and psychological functioning are reported following transplant [
30‐
34]. It is known, for other populations, that medical late effects and chronic physical health problems can impact quality of life and/or psychosocial outcomes [
35‐
39]. There is also growing evidence to suggest that having a genetic condition in the family also confers an emotional burden [
40]. The degree to which these factors impact on outcomes in IEI patients is unknown.