. Author manuscript; available in PMC: 2013 Mar 1.

Published in final edited form as: Qual Life Res. 2011 Jun 3;21(2):341–357. doi: 10.1007/s11136-011-9941-4

Table 2.

Domains generated by literature review

Symptoms	Treatment/side effects/treatment adherence	Appearance	Worry	Social
Pain	Compliance with medications	Pale	Worry about having to get treatment	Feel inferior/differed from others
Headache	Side effects of common medications:	Yellow eyes	Worry about having to get treatment	Feel inferior/differed from others
Fatigue/tired	Side effects of common medications:	Small size pre-pubertal appearance	Worry about side effects from medicine
Difficulty breathing	Nausea	Small size pre-pubertal appearance	Worry about side effects from medicine
Bed wetting	Constipation		Worry about dying
Weakness	Fatigue/sedation
Difficulty walking	Bad taste
Swelling of hands and feet	Hair loss Weight gain
Fever	Itching
Difficulty in school performance	“Side effect” of treatment Pain (from IV insertion/IM injections/lab draws) Death