Young adults with type 1 diabetes and their experiences with diabetes follow‐up and participation in the DiaPROM pilot trial: A qualitative study

Abstract

Aim To explore young adults' experiences of outpatient follow‐up appointments, completing electronic Patient‐Reported Outcome Measures (PROMs), and using the Problem Areas In Diabetes (PAID) scale during the Diabetes Patient‐Reported Outcome Measures (DiaPROM) pilot trial. Methods We performed a qualitative study among 19 young adults (aged 22–39 years) with type 1 diabetes who participated in the pilot trial. Between February and June 2019, we conducted individual, semi‐structured telephone interviews with participants from the intervention and control arms. We analysed the data using thematic analysis. Results Our analyses generated three themes, each with two subthemes: (1) Follow‐up with limitations; (i) Marginal dialogue about everyday challenges, (ii) Value of supportive relationships and continuity, indicate that previous follow‐up had been experienced as challenging and insufficient. (2) New insights and raised awareness; (i) More life‐oriented insights, (ii) Moving out of the comfort zone, suggest mostly positive experiences with completing questionnaires and discussing the PAID scores. (3) Addressing problem areas with an open mind; (i) Need for elaboration, (ii) Preparedness for dialogue, indicate that both openness and explanations were vital in the follow‐up. Conclusions Participants characterised the previous follow‐up as challenging and insufficient. They described completing and using the PAID as somewhat uncomfortable yet worthwhile. Our findings also suggest that by utilising diabetes distress data alongside health and biomedical outcomes, consultations became more attuned to the young adults' wishes and needs, mainly because the dialogue was more focused and direct. Hence, the PAID has the potential to facilitate person‐centredness and improve patient–provider relationships.

Implementing the Digital Diabetes Questionnaire as a Clinical Tool in Routine Diabetes Care: Focus Group Discussions With Patients and Health Care Professionals

“…In accordance with the current results, the researchers reported that their approach promoted reflective thinking and dialogue and facilitated patient-provider relationships and person-centeredness [ 42 ]. Another similarity between the results of the 2 studies is that the questionnaire scoring was enlightening for HCPs [ 42 , 43 ]. Satisfactory glycemic control can obstruct HCPs’ understanding of the patient’s situation, thus concealing significant challenges they face in everyday life.…”

“…In Norway, a related project investigated the assessment of diabetes distress in diabetes care for young adults with type 1 diabetes. This previous study used the Problem Areas In Diabetes (PAID) scale in conjunction with an empowerment-based communication manual to guide nurses in reviewing and discussing PAID scores [ 40 - 42 ]. In accordance with the current results, the researchers reported that their approach promoted reflective thinking and dialogue and facilitated patient-provider relationships and person-centeredness [ 42 ].…”

“…This previous study used the Problem Areas In Diabetes (PAID) scale in conjunction with an empowerment-based communication manual to guide nurses in reviewing and discussing PAID scores [ 40 - 42 ]. In accordance with the current results, the researchers reported that their approach promoted reflective thinking and dialogue and facilitated patient-provider relationships and person-centeredness [ 42 ]. Another similarity between the results of the 2 studies is that the questionnaire scoring was enlightening for HCPs [ 42 , 43 ].…”

Spørreskjema gir bedre oppfølging av unge voksne med diabetes type 1

“…Vi har hittil gjennomført re delstudier i DiaPROM, alle ved Haukeland universitetssjukehus (18)(19)(20)(21). Målet med disse studiene var å teste gjennomførbarheten av intervensjonen og derved undersøke usikkerhet knyttet til å gjennomføre en fullskala randomisert kontrollert e ektstudie (RCT).…”

“…I den tredje studien intervjuet vi 19 unge voksne med diabetes type 1 som deltok i pilotstudien (20). Vi spurte om deres erfaringer med poliklinisk oppfølging generelt samt det å besvare elektroniske PROM og bruke PAID som dialogverktøy i konsultasjoner.…”