74 DATA HANDLING AND REPORTING All recordings were transcribed ad verbatim in F4 Transkript and analysed lineby-line in Atlas.ti 8.4. Two pairs (MDB and JV for patient data, MDB and JT for HCP data) analysed the transcripts. First, both pairs fully read ten transcripts, created two preliminary codebooks and discussed those to increase uniformity. Second, the pairs coded three transcripts independently, while constantly discussing and revising the codebook, until a Krippendorff interrater agreement[47] above 0.65 was reached. The analysts divided and separately coded the remaining transcripts; new codes were added during analysis. During several bilateral and group discussions, the researchers (MDB, JV, JT, AFW, SMR, GN and RW) discussed the final codes and organized them into main- and subthemes. Codes and themes, with illustrative quotes in Dutch and English, were debated until consensus was reached. The final themes and codes are in Supplementary files 3 and 4. In our synthesis, we compared the themes of patients and HCPs to identify strategies to optimize self-management, and sought for consensus and contrasts. We also determined if common approaches of HCPs to promote self-management met the needs of patients with LHL. Last, we compared what patients and HCPs considered effective and ineffective strategies to promote self-management to seek for discrepancies between their opinions. Based on this synthesis, we formulated promising strategies to optimize self-management of patients with LHL. RESULTS CHARACTERISTICS Table 3.1 shows the participants’ characteristics. Patients had a mean age of 68.5, 71% was male. HCPs had a mean age of 46, 24% was male. Patients had mean scores of 21.1 on total HL and 6.7 on critical HL. The latter indicates that patients experienced problems to search and reflect on information. Eight patients were lost to follow-up: five departed or reported severe illness and three lost interest.
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