All 11 patients participating in cognitive interviews of the initial draft instrument were found to understand the instructions and items as intended, with the exception of two questions: immediate need, which was deleted as it was already included in the Event Log, and fullness or early satiety, which was subsequently deleted (resulting in a 15-item Diary); the Event Log was left unchanged.
Whilst the sample was opportunistic, we ensured that we continued to follow-up willing participants until we reached saturation in the data analysis, and we conducted interviews iteratively, whereby the analysis of initial interviews was used to inform further collection.
The NF1 specific HRQOL instrument was developed using a standard method of PedsQL™ module development – literature review, focus group/semi-structured interviews, cognitive interviews and experts' review of initial draft, pilot testing and field testing.
After a set of initial interviews, the interview guide was revised further in order to encourage the patient's story and include additional topics, for example, the level of explanation that professionals provided and how patients managed information they gave to professionals.
This qualitative, thematic approach enabled consideration of: the relationship between themes as interviews progressed; the robustness of initial coding in the light of further interviews; contradictions between and within themes; and the ways in which broader themes may encompass a range of more specific ones.
Emergent themes were reviewed by HL-Q and thematic analysis of initial interviews was used to inform and refine topics for discussion in subsequent interviews.
Reuters provided transcripts of initial interviews with the three following their release, and offered to make them available for interview by investigators.
Bledsoe played tape of initial interviews to contradict this.
In Stage 1 (identify independent variables), we identified multiple potential M&A targets within the chaebol and selected cases that reflected combinations of high and low states of uncertainty and controversy, based on information from a series of initial interviews.
All participants able to be contacted corroborated the content of initial interviews and most of them elaborated upon initial data.
