Table 2.

Similarities and differences in conceptual coverage of health-related quality of life instruments used in diseases analogous to PK deficiency

Health status/HRQoL domains/symptoms	WHOQOL-Bref [42]	SF-36v2 [43]	EORTC QLQ C30 [44, 45]	CHQ [46, 47]	PedsQL [46, 48]	PedsQL MFS [49, 50]	PedsFACIT-F [51]	PedsQL SCD [52]	ASCQ-Me [53]	FROM-16 [54]
Physical well-being	●	●	●	●	●			●	●
Psychological distress	●	●	●	●	●				●
Impact on daily activities	●	●	●	●	●			●
Impact on school/productivity				●	●
Impact on work/productivity	●	●	●
Impact on self-image	●			●					●
Impact on social life	●	●	●	●	●				●
Perceived general health/HRQoL	●	●	●	●
Cognitive impairment	●		●						●
Family life impacts			●	●						●
Fatigue		●	●			●	●
Shortness of breath			●
Pain (abdomen, chest, headache)	●	●	●	●				●	●
Sleep disturbance			●						●
Depression	●	●	●

In general, a concept was considered to have been addressed by an item if there was at least 1 item addressing that concept in a particular PRO measure

SF-36 short-form medical outcome, WHOQOL-BREF WHO Quality of Life-BREF, FACT-An functional assessment of cancer therapy-anemia, FROM-16 Family-Reported Outcome Measure-16, PedsQL Pediatric Quality of Life Inventory, MFS Multidimensional Fatigue Scale, pedsFACIT-F pediatric Functional Assessment of Chronic Illness Therapy-Fatigue, CHQ Children’s Health Questionnaire, ASCQ-Me adult sickle cell quality of life measurement information system, FROM family-reported outcome measure