The Use of an Iterative Strategy of Cognitive Interview and Expert Consultation to Revise the Quality of Life Scale for Patients with Aplastic Anemia (QLS-AA)

Figures & data

Figure 1 Schematic diagram of the iterative strategy of cognitive interview and expert consultation.

Table 1 Domains and Examples of Draft Items and Cognitive Interview Probes

Domains	Draft Items		Cognitive Interviews
	Example Question	Response Categories	Example Probe	Probe Purpose
Physical	Hirsutism/voice changes due to medication have troubled my life.	1= Not at all 2= A little bit 3= Somewhat 4= Quite a bit 5= Very much	Please tell me in your own words what this question is asking?	Test comprehension
Psychological	In the past month, I have been feeling anxious/nervous/distraught.	1= Never 2= Rarely 3= Sometimes 4= Often 5= Always	Are there any words that you do not understand in this item?	Test question clarity
Social relationships	Aplastic anemia interfered with my daily social activities.	1= Not at all 2= A little bit 3= Somewhat 4= Quite a bit 5= Very much	Can you talk about why you came up with this answer?	Elicit participant thought process
Spirituality	Faith in my heart comforts and encourages me most of the time.	1= Not at all 2= A little bit 3= Somewhat 4= Quite a bit 5= Very much	Was it easy or difficult for you to choose this answer?	Test rationality of question-answer
Environment	I need more ways to communicate with fellow patients.	1= Never 2= Rarely 3= Sometimes 4= Often 5= Always	I noticed you hesitated before your response, what were your thoughts?	Identify source of potential confusion

Table 2 Characteristics of Cognitive Interview Participants and Experts

Characteristics		Participants (n= 21)	Experts (n=6)
Male		71% (n=15)	16.7% (n=1)
Mean age in years		31.8±11.3	41.3±9.0
Education
	High school or less	52.4% (n=11)	/
	College graduate	38.1% (n=8)	50% (n=3)
	Master degree or above	9.5% (n=3)	50% (n=3)
Work experience (Median, IQR)		/	12.5 (10 to 21)
Disease course (Median, IQR)^a		12.5 (6 to 37)	/
Anemia
	Yes	76.2% (n=16)	/
	No	23.8% (n=5)
Treatment regimen received
	Transfusion therapy	95.2% (n=20)	/
	Cyclosporin treatment	85.7% (n=18)
	TCM treatment^b	71.4% (n=15)
	Androgen therapy	61.9% (n=13)
	HSCT therapy	47.6% (n=10)
	Eltrombopag treatment	42.9% (n=9)
Pecuniary condition
	Completely independent	19.1% (n=4)	/
	Partial independence	19.1% (n=4)
	Completely dependent	61.9% (n=13)

Notes: ^aThe course of the disease is measured in month. ^bTCM treatment meansTraditional Chinese medicine treatment.

Table 3 Examples of Analysis of Item-Specific Problems and Its Revision

Problem Coding		Example
		Original Item	Problem Analysis	Revised Item
Clarity	Wording	Aplastic anemia and treatment have reduced my appetite and taste.	1-S1, 1-S2: The expressions of “loss of appetite” and “loss of taste” are similar, which is easy to confuse.	Aplastic anemia and treatment made me feel poor appetite and/or diminished taste.
	Technical term	Drug-induced facial acne/ hyperpigmentation has affected my life.	1-S2, 1-S5: Does not understand the concepts of “facial acne” and “hyperpigmentation”.	Drug-induce pimple/skin dull have affected my life.
Knowledge/recall		I have some defecation problems (such as: diarrhea, constipation).	1-S15: Defecation problems cannot fully recall the entire process.	During the last 2 weeks, I have some defecation problems (such as diarrhea, constipation).
Response categories	Vague	Aplastic anemia and treatment make it difficult for me to climb stairs.	1-S14: I can climb stairs, but my physical strength is poor, and I can only climb two or three floors (stairs). 1-S10: The height of the stairs should be limited.	Aplastic anemia and treatment make it difficult for me to climb stairs below three floors.
	Overlapping	Mouth ulcers making life difficult for me Bleeding of the oral mucosa or gums brings trouble to my life	1-S11, 1-S16: Oral ulcers, gum bleeding, and gingival hyperplasia are all oral problems caused by aplastic anemia and treatment.	Oral problems (ulcers, infections, bleeding) bring trouble to my life.
Others	Diversification	(interpretative analysis in expert consultation)

Table 4 Opinions and Amendments

Original Items	Opinions	Adoption	Reason
I am worried about taking medicine for the rest of my life.	2-S2 believes that the item is too colloquial.	Not taken	The colloquial expression is conducive to easier understanding.