Diabetes Distress and Associations With Demographic and Clinical Variables: A Nationwide Population-Based Registry Study of 10,186 Adults With Type 1 Diabetes in Norway.

OBJECTIVE: To estimate diabetes distress prevalence and associations with demographic and clinical variables among adults with type 1 diabetes in Norway. RESEARCH DESIGN AND METHODS: In this nationwide population-based registry study, the 20-item Problem Areas in Diabetes (PAID-20) questionnaire was sent to 16,255 adults with type 1 diabetes. Linear regression models examined associations of demographic and clinical variables with distress. RESULTS: In total, 10,186 individuals (62.7%) completed the PAID-20, with a mean score of 25.4 (SD 18.4) and 21.7% reporting high distress. Respondents endorsed worrying about the future and complications as the most problematic item (23.0%). Female sex, younger age, non-European origin, primary education only, unemployment, smoking, continuous glucose monitoring use, more symptomatic hypoglycemia, reduced foot sensitivity, treated retinopathy, and higher HbA1c were associated with higher distress. CONCLUSIONS: Diabetes distress is common among adults with type 1 diabetes and associated with clinically relevant factors, underlining that regular care should include efforts to identify and address distress.

Evaluation of an interprofessional follow-up intervention among people with type 2 diabetes in primary care-A randomized controlled trial with embedded qualitative interviews.

With an ageing population and improved treatments people live longer with their chronic diseases, and primary care clinics face more costly and difficult-to-treat multimorbid patients. To meet these challenges, current guidelines for the management of type 2 diabetes suggest that an interprofessional team should collaborate to enhance the delivery of worthwhile self-management support interventions. In this study, we aimed to evaluate the effects of an empowerment-based interprofessional follow-up intervention in people with type 2 diabetes in primary care on patient-reported outcomes, biomarkers and weight, and to explore the experiences of patients attending the intervention. We invited patients during regular visits to their general practitioners. The 12-month intervention included 1) empowerment-based counselling; 2) a standardized medical report. The control group received consultations with physicians only. The primary outcome was the Patient Activation Measure, a patient-reported measure assessing individual knowledge, skills, and confidence integral to managing one's health and healthcare. After the trial we conducted qualitative interviews. We observed no difference in the primary outcome scores. On secondary outcomes we found a significant between-group intervention effect in favor of the intervention group, with mean differences in glycemic control after 12 months (B [95% CI] = -8.6 [-17.1, -0.1] mmol/l; p = 0.045), and significant within-group changes of weight (B [95% CI] = -1.8 kg [-3.3, -0.3]; p = 0.02) and waist circumference (B [95% CI] = -3.9 cm [-7.3, -0.6]; p = 0.02). The qualitative data showed that the intervention opened patients' eyes for reflections and greater awareness, but they needed time to take on actions. The patients emphasized that the intervention gave rise to other insights and a greater understanding of their health challenges. We suggest testing the intervention among patients with larger disease burden and a more expressed motivation for change.

Patient activation in adults attending appointments in general practice: a cross-sectional study.

BACKGROUND: Patient activation refers to patients' knowledge, confidence, skills, ability, beliefs, and willingness to manage their health and healthcare. Patient activation is an essential component of self-management and identifying patient activation levels will identify people at risk for health decline at an earlier stage. We aimed to explore patient activation in among adults attending general practice by (1) investigating differences in patient activation according to characteristics and markers of health-related behaviour; (2) examining the associations of quality of life and satisfaction with health with patient activation; and (3) comparing patient activation between persons with or without type 2 diabetes (T2D) and with or without elevated T2D risk. METHODS: We performed a cross-sectional study and recruited 1,173 adult patients from four Norwegian general practices between May to December 2019. The participants completed a questionnaire containing sociodemographic and clinical variables, the Patient Activation Measure (PAM-13), the quality of life and satisfaction with health items from the WHO Quality of Life-BREF, three questions about exercise (regularity, intensity and exercise time), the Finnish Diabetes Risk Score (FINDRISC) and Body Mass Index. We tested differences between groups and associations using Chi-squared tests, Fisher's exact tests, t-tests, one-way ANOVAs and Spearman's rho tests. RESULTS: The sample's mean PAM-13 score was 69.8 (0-100) (SD 14.8). In the total population, we found that participants reporting higher patient activation scores also reported more favourable health-related behaviours (exercise and healthy eating). We found positive correlations between the PAM-13 scores and, respectively, the quality of life score and the satisfaction with health score. We found no differences in patient activation between people with or without T2D and those with or without elevated T2D risk. CONCLUSIONS: We found that higher patient activation was associated with favourable health-related behaviours, a better quality of life and better satisfaction with health among adults attending four general practices in Norway. Assessing patient activation has the potential to help general practitioners identify patients who might benefit from closer follow-up in advance of negative health outcomes.

Use of patient-reported outcome measures (PROMs) in clinical diabetes consultations: the DiaPROM randomised controlled pilot trial.

OBJECTIVE: To pilot test the proposed DiaPROM trial components and address uncertainties associated with conducting a full-scale randomised controlled trial (RCT) to evaluate whether such a trial is feasible. DESIGN: Two-arm pilot RCT. PARTICIPANTS: Adults aged ≥18-39 years, with minimum 1 year type 1 diabetes duration, attending outpatient follow-up. Exclusion criteria were pregnancy, severe cognitive, somatic or psychiatric conditions and impaired vision. RANDOMISATION AND INTERVENTION: All participants completed electronic Patient-Reported Outcome Measures (PROMs) prior to the annual diabetes consultation. Using computer-generated block-randomisation without blinding, we assigned participants in a 1:1 ratio stratified by sex to receive standard care or an intervention. Physicians reviewed diabetes distress scores (Problem Areas In Diabetes scale) and referred individuals with scores ≥30 or single item(s) ≥3 to minimum two diabetes nurse consultations where reported problems were reviewed and discussed. OUTCOMES: Recruitment and retention rates; participants perceptions about intervention components. Variance and estimated between-group differences in follow-up scores (Diabetes Distress Scale (DDS), WHO 5-Well-being Index, Perceived Competence for Diabetes Scale and glycaemic control) and DDS correlation with baseline scores, to assist sample size calculations. RESULTS: We randomised 80 participants to the control or intervention arm (one participant was later excluded). 23/39 intervention arm participants qualified for additional consultations and 17 attended. 67/79 attended the 12-month follow-up (15.2% attrition); 5/17 referred to additional consultations were lost to follow-up (29.4% attrition). Participants reported PROMs as relevant (84.6%) and acceptable (97.4%) but rated the usefulness of consultations as moderate to low. Baseline mean±SD DDS score was 2.1±0.69; DDS SD was 0.71 (95% CI: 0.60 to 0.86) at follow-up; correlation between baseline and follow-up DDS scores was 0.8 (95% CI: 0.7 to 0.9). CONCLUSIONS: The pilot trial revealed need for intervention modifications ahead of a full-scale trial to evaluate use of PROMs in diabetes consultations. Specifically, participant acceptability and intervention implementation need further investigation.

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.

Hypoglycaemia in older home-dwelling people with diabetes- a scoping review.

BACKGROUND: Hypoglycaemia is associated with cognitive and functional decline in older people with diabetes. Identification of individuals at risk and prevention of hypoglycaemia is therefore an important task in the management of diabetes in older home-dwelling individuals. The purpose of this scoping review was to map the literature on hypoglycaemia in home-dwelling older people with diabetes. METHODS: This scoping review included original research articles on hypoglycaemia in older (≥ 65 years) individuals with diabetes from developed countries. A broad search of the databases Cinahl, Embase and Medline was performed in July 2018. The report of the scoping review was conducted in accordance with the PRISMA Extension for Scoping Reviews. RESULTS: Our database search identified 577 articles of which 23 were eligible for inclusion. The identified literature was within four areas: 1) incidence of hypoglycaemia in older home-dwelling people with diabetes (11/23 articles), 2) risk factors of hypoglycaemia (9/23), 3) diabetes knowledge and self-management (6/23) and 4) consequences of hypoglycaemia for health care use (6/23). The majority of the literature focused on severe hypoglycaemia and the emergency situation. The literature on diabetes knowledge and management related to preventing adverse events relevant to older home-dwellers, was limited. We found no literature on long-term consequences of hypoglycaemia for the use of home health care services and the older persons' ability to remain home-dwelling. CONCLUSIONS: We identified a lack of studies on prevention and management of hypoglycaemia in the older individuals' homes. Such knowledge is of utmost importance in the current situation where most western countries' governmental policies aim to treat and manage complex health conditions in the patient's home. Future studies addressing hypoglycaemia in older individuals with diabetes are needed in order to tailor interventions aiming to enable them to remain home-dwelling as long as possible.

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.

Electronic capturing of patient-reported outcome measures on a touchscreen computer in clinical diabetes practice (the DiaPROM trial): a feasibility study.

BACKGROUND: Living with type 1 diabetes (T1D) is demanding, and emotional problems may impair ability for diabetes self-management. Thus, diabetes guidelines recommend regular assessment of such problems. Using patient-reported outcome measures (PROMs) to assess diabetes-related distress and psychological well-being is considered useful. It has been proposed that future work should examine the use of PROMs to support the care of individual patients and improve the quality of health services. To our knowledge, the use of PROMs has not been systematically evaluated in diabetes care services in Norway. Electronically captured PROMs can be directly incorporated into electronic patient records. Thus, the study's overall aim was to examine the feasibility and acceptability of capturing PROMs electronically on a touchscreen computer in clinical diabetes practice. METHODS: Adults with T1D age ≥ 40 years completed PROMs on a touchscreen computer at Haukeland University Hospital's diabetes outpatient clinic. We included 46 items related to diabetes-related distress, self-perceived diabetes competence, awareness of hypoglycaemia, occurrence of hyperglycaemia, hypoglycaemia and fluctuating glucose levels, routines for glucose monitoring, general well-being and health-related quality of life. Participants subsequently completed a paper-based questionnaire regarding comprehension and relevance of the PROMs, acceptance of the number of items and willingness to complete electronic PROMs annually. We wrote field notes in the outpatient clinic based on observations and comments from the invited participants. RESULTS: During spring 2017, 69 participants (50.7% men), age 40 to 74 years, were recruited. Generally, the touchscreen computer functioned well technically. Median time spent completing the PROMs was 8 min 19 s. Twenty-nine (42.0%) participants completed the PROMs without missing items, with an 81.4% average instrument completion rate. Participants reported that the PROMs were comprehensible (n = 62) and relevant (n = 46) to a large or very large degree, with an acceptable number of items (n = 51). Moreover, 54 were willing to complete PROMs annually. Participants commented that the focus on living with diabetes was valued. CONCLUSIONS: Capturing PROMs on a touchscreen computer in an outpatient clinic was technically and practically feasible. The participants found the PROMs to be relevant and acceptable with a manageable number of items, and reported willingness to complete PROMs annually.

Use of patient-reported outcome measures (PROMs) in clinical diabetes consultations: study protocol for the DiaPROM randomised controlled trial pilot study.

INTRODUCTION: Although diabetes distress is found to be associated with decreased glycaemic control among adults with type 1 diabetes, the psychological and emotional impact of living with the condition is often not recognised and often under-reported in diabetes care. Therefore, regular assessment of diabetes distress is recommended. Assessment of diabetes distress using patient-reported outcome measures (PROMs) in clinical practice has the potential to enhance care for people with diabetes by identifying problems and improving patient-clinician communication. In this study protocol, we describe a pilot randomised controlled trial (RCT) aiming to test the feasibility of all components of an empowerment-based intervention using PROMs as dialogue support in clinical diabetes consultations, and to address the uncertainties associated with running a fully powered evaluation study. METHODS AND ANALYSIS: We will undertake a two-arm pilot RCT of an intervention using the Problem Areas In Diabetes (PAID) scale in clinical diabetes consultations in order to conclude whether a fully powered trial is appropriate and/or feasible. The study will also include qualitative indepth interviews with participants and healthcare providers. Our objectives are to (1) evaluate the recruitment procedures and attrition rates; (2) evaluate the performance of the randomisation procedure; (3) evaluate the participants' mean scores on the outcome measures before and after the intervention; (4) evaluate if the intervention consultations are acceptable and feasible; and (5) explore patients' and healthcare providers' experiences with the use of PAID as dialogue support and empowerment-based communication skills in clinical diabetes consultations. The quantitative data analysis includes descriptive statistics (frequencies, percentages, means, SD and CI). For the qualitative data, we will perform thematic analysis. ETHICS AND DISSEMINATION: Ethical approval has been obtained from the Western Norway Regional Committee for Medical and Health Research Ethics (2017/1506/REC west). We will present the findings from the study phases at national and international conferences and submit manuscripts to peer-reviewed journals and popular science journals. TRIAL REGISTRATION NUMBER: NCT03471104; Pre-results.

Differences in depression, treatment satisfaction and injection behaviour in adults with type 1 diabetes and different degrees of lipohypertrophy.

AIMS AND OBJECTIVES: To assess the prevalence of lipohypertrophy, and to compare differences in external, personal and regimen factors in adults with type 1 diabetes and different degrees of lipohypertrophy. BACKGROUND: Suboptimal insulin injection behaviour is associated with lipohypertrophy, which may affect insulin absorption and lead to blood glucose fluctuations. Few, if any studies have investigated how external, personal and regimen factors differ in people with type 1 diabetes and different degrees of lipohypertrophy. DESIGN: A cross-sectional study including adults with type 1 diabetes at a diabetes outpatient clinic in a Norwegian university hospital. METHODS: Participants (n = 215) were included consecutively at scheduled appointments. Sociodemographic, diabetes and insulin treatment data, and self-report questionnaires concerning patient activation (Patient Activation Measure), depression (Patient Health Questionnaire-2), diabetes distress (Diabetes Distress Scale), type D personality (14-item Type D scale), treatment satisfaction (Insulin Treatment Satisfaction Questionnaire) and motivation (Treatment Self-Regulation Questionnaire), were collected. Lipohypertrophic injection sites were identified by palpation by diabetes specialist nurses. RESULTS: Lipohypertrophy was present in 53% and was more frequent in insulin pen users (63%) compared to insulin pump users (34%). Participants with two or more lipohypertrophic areas had higher depression scores, lower treatment satisfaction with glycaemic control, higher bolus doses and reported suboptimal injection behaviour compared to those with no lipohypertrophic areas. There were no differences in patient activation, diabetes distress, type D personality or motivation between the groups. DISCUSSION AND CONCLUSION: Compared to pump treatment, pen treatment requires greater awareness of injection technique. Symptoms of depression and lower treatment satisfaction might affect diabetes self-management and glycaemic control, but the association with lipohypertrophy needs further exploration. RELEVANCE TO CLINICAL PRACTICE: Lipohypertrophy is more frequent in insulin pen users compared to pump users. Nurses should focus on injection technique education, and should also consider screening for depressive symptoms and treatment satisfaction as these factors could be associated with development of lipohypertrophy.