#1204 Measuring needling experience: development and validation of the Needling Patient Reported Experience Measure (NPREM)
Authors: Moore Currie , Flanagan Rebacca , Busby Amanda , Ellis-Caird Helen , Awan Faizan Khalid , Paul Tarsem , Fielding Catherine , Mccafferty Kieran , van der Veer Sabine , Hawkins Janine , Farrington Kenneth , Wellsted David 
Published: May 2024

Background and Aims

Most people on haemodialysis rely on having reliable access to their vascular system, often via surgically created arteriovenous fistula or graft. At the beginning of each dialysis session, needles must be inserted. While ‘needling’ is a key step, an annual UK survey shows that needling is one of the lowest scoring areas of reported experience for individuals receiving haemodialysis in a kidney centre or satellite unit. Qualitative research indicates that needling can be painful and cause anxiety. Although an emerging area of research, no validated measures exist which assess patient reported experience of needling. We aimed to develop a questionnaire which reliably measures needling experience. The Needling Patient Reported Experience Measure (NPREM) was developed over multiple phases consisting of qualitative interviews with patients, item generation involving a multidisciplinary expert group including experts by experience, cognitive interviewing and pilot testing. Here we report the results of the final validation phase.

Methods

Seven NHS kidney centres participated in the validation phase (aiming for 500 participants). Between February-April 2023, participants completed either online or paper versions of the questionnaire. A subset of participants (aiming for 80-120) completed a follow-up questionnaire pack (NPREM, Change of Circumstances) 2-4 weeks after the first to assess the reliability of the scale over time.

Analyses included a full evaluation of the scale psychometric properties and factor analyses to assess dimensional structure. Correlations with other validated measures (Vascular Access Quality of Life [VASQoL], EuroQol 5 Dimension [EQ5D-5L], and Patient Activation Measure [PAM]) were used to assess the convergent and divergent validity of the NPREM.

Results

468 people participated (sample characteristics: male 66%, mean age 66 years (SD 14), White 75%, access via fistula 95%, first access 76%), of which 99 completed the follow-up. Overall, the NPREM showed good internal consistency (Cronbach's alpha = 0.94) and moderate to strong inter-item correlations. Factor analyses indicated that needling experience was a unidimensional construct, with one strong, main factor. Follow-up scores were strongly correlated (r = 0.89) with participants’ initial NPREM responses, demonstrating high reliability. Evidence of convergent validity was seen in the strong correlations between the NPREM and 1) the VASQoL (r = 0.60) and 2) the Overall Needling Experience question (r = 0.79). NPREM did not correlate with the EQ-5D (r = −0.31), the EQ-5D overall health (r = 0.24) or PAM (0.17), demonstrating divergent validity. The research team reviewed all items and themes reaching a consensus on items included, resulting in the validated 28-item NPREM (v 1.0), across five themes of care (Communicating with the Team, My Fistula/Graft and Needling, Steps in Needling, Working Together, My Personal Experience) plus Overall Needling Experience.

Conclusion

These results indicate that the NPREM offers a robust needling-specific tool to measure patient experience in those receiving haemodialysis. It addresses a gap by offering a way for kidney care providers to assess needling experience, both as a whole and across themes of care, which may facilitate meaningful service improvements. When published, the NPREM will be publicly available and free to use.