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

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.

Transition from paediatric to adult care: a qualitative study of the experiences of young adults with type 1 diabetes.

AIM: The aim of the present study was to explore how young adults with type 1 diabetes (T1D) experienced the transition from paediatric to adult health care services. DESIGN: A qualitative, explorative design was used. METHODS: Eleven young adults with T1D receiving adult diabetes care at a hospital in western Norway participated in semi-structured interviews. Data were analysed using Interpretive Description, an inductive approach inspired by grounded theory, ethnography and phenomenology, and specifically designed to explore phenomena in clinical practice aiming to generate new knowledge and skills. RESULTS: Four main themes regarding the adolescents' experiences of the transfer from paediatric to adult care emerged: (i) limited information about the transition; (ii) transition from frequent, thorough and personal follow-up to a less comprehensive and less personal follow-up; (iii) the importance of being seen as a whole person; (iv) limited expectations of how the health care services were organised. CONCLUSIONS: The study showed that the existing routines for transfer between paediatric and adult care are not optimal. The participants expressed that they were not prepared for the dissimilarities in follow-up and were predominantly less pleased with the adult care follow-up. RELEVANCE TO CLINICAL PRACTICE: The findings support a need for structured transition programmes, that is programmes that contribute to young adults with T1D receiving a safe and positive transition at an otherwise demanding life phase. Young peoples' individual needs for the transition to and follow-up in adult care may be promoted by an approach based on person-centred care.

Telemedicine Versus Standard Follow-Up Care for Diabetes-Related Foot Ulcers: Protocol for a Cluster Randomized Controlled Noninferiority Trial (DiaFOTo).

BACKGROUND: This paper presents the protocol for an ongoing study to evaluate a telemedicine follow-up intervention for patients with diabetes-related foot ulcers. Diabetes-related foot ulcers represent challenges for patients and the health services. The large increase in the prevalence of diabetes, combined with the aging population, means that the absolute number of patients with diabetes-related foot ulcers is likely to continue to increase. Health care services therefore need to provide close clinical follow-up care for people with diabetes both in primary and specialist care. Information and communication technologies may enable more integrated treatment and care pathways across organizational boundaries. However, we lack knowledge about the effect of telemedicine follow-up and how such services can be optimally organized. OBJECTIVE: To present the design and methods of a study evaluating a telemedicine follow-up intervention for patients with diabetes-related foot ulcers. METHODS: The study is designed as a cluster randomized controlled trial (noninferiority trial) involving municipalities or municipality districts (clusters) belonging to one clinical site in Western Norway. The study includes patients with type 1 and type 2 diabetes presenting with a new foot ulcer at the initial visit to the clinic. Patients in the intervention group receive telemedicine follow-up care in the community. The key ingredient in the intervention is the close integration between health care levels. The intervention is facilitated by the use of an interactive wound platform consisting of a Web-based ulcer record combined with a mobile phone, enabling counseling and communication between nurses in the community and specialist health care. Patients in the control group receive standard hospital outpatient care. The primary endpoint in the trial is healing time; secondary outcomes include amputation and death, patient-reported outcome measures, and follow-up data on the recurrence of foot ulcers. In addition, qualitative substudies are being performed to provide a more comprehensive evaluation of the ongoing processes during the trial with the patients in the intervention and control groups and those health care professionals either working in primary care or in specialist care delivering the intervention. RESULTS: The project has been funded. The inclusion of patients started in September 2012. Because recruitment goals were not met in the initial period, two more clinical sites have been included to meet sample size requirements. Patient recruitment will continue until June 2016. Data collection in the qualitative substudies has been completed. CONCLUSIONS: This telemedicine trial operates in a novel setting and targets patients with diabetes-related foot ulcers during a 12-month follow-up period. The trial addresses whether integrated care using telemedicine between primary and specialist health care can be an equivalent alternative to standard outpatient care. TRIAL REGISTRATION: ClinicalTrials.gov NCT01710774; https://clinicaltrials.gov/ct2/show/NCT01710774 (Archived by WebCite at http://www.webcitation.org/6im6KfFov).