Development of the Thalassaemia Adult Life Index (ThALI)

Table 1 Community sample characteristics

Variable	Value in % or n
Gender
Female	47%
Male	53%
Age
Mean (SD)	33.74 (9.63)
Range	19–68
Ethnicity
Greek Cypriot	36%
Indian	25%
Greek	10%
Middle Eastern	10%
Chinese	8%
White British	5%
Turkish Cypriot	3%
Pakistani	3%
Educational status
No qualifications	7%
G.C.S.E. or equivalent i.e. school leaver qualification(s)	34%
University entry or equivalent qualification(s)	13%
Graduate degree or equivalent qualification(s)	38%
Higher degree or equivalent qualification(s) i.e. postgraduate or PhD	8%
Employment status
Employed	69%
Self-employed	3%
Unemployed	10%
Other (student/housewife)	18%
Marital status
Single	58%
Married	35%
Living together as married	7%
Dependents
Mean (SD)	0.47 (0.99)
(Range)	(0–5)
Treatment type
‘Pump’	32%
Oral chelator drug	34%
Combination	34%
Illness complication(s)
Osteoporosis/Osteoarthritis^a	28%
Diabetes	22%
Cardiac problems	10%
Hypothyroidism^b	8%
Impaired glucose tolerance	6%
Asthma	4%
Other (not stated)	4%
Hepatitis C^c	4%
Insensitivity to pain	4%
Eczema	4%
Coeliac disease^d	2%
Hormonal Imbalance	2%

^aLoss of bone tissue causing the bone to become brittle and fracture easily/a common joint disease characterized by degeneration of the cartilage that lines joints or by formation of an outgrowth of bone at the boundary of a joint (osteophyte), leading to pain, stiffness and occasionally loss of function [22]. ^bThe underproduction of thyroid hormones by an underactive thyroid gland [22]. ^cInfection often transmitted through sharing needles and/or blood transfusions; can progress to cirrhosis (long term damage to liver cells) and/or hepatoma (a type of liver cancer) [22]^dThe lining of the small intestine gets damaged due to hypersentivity to gluten (protein found in wheat, rye and other cereals) [22]

ISSN: 1477-7525