Kunneman, Marleen

Abstract Aim This study aims to assess the treatment burden and health‐related quality of life (HRQoL) in young adults with type 1 diabetes (T1D). Methods Online survey on experienced treatment burden (Treatment Burden Questionnaire, TBQ, 0–150, higher scores indicate higher burden) and HRQoL (Type 1 Diabetes and Life questionnaire for ages 18–25 and 26–45, T1DAL, 0–100, higher scores indicate better HRQoL) among Dutch young adults with T1D (aged 18–30). Results In total, 294 young adults with T1D completed the survey. Mean TBQ score was 59.5 (SD = 24.9). Regular medical care reminding participants of their health problems scored highest. Mean T1DAL scores were 55.9 (SD = 12.9) for ages 18–25, and 62.1 (SD = 13.2) for ages 26–30. Lowest scores were in the subcategory ‘Emotional experiences and daily activities’ (18–25: median = 41.7, IQR = 24.9; 26–30: median = 47.8, IQR = 22.5). TBQ was strongly negatively correlated with T1DAL ( r = −0.69, 95% CI [−0.74, −0.62], p < 0.001). Characteristics associated with higher treatment burden and lower HRQoL included female gender, lower time in range and dissatisfaction with diabetes management approach. Conclusion Young adults with T1D report considerable treatment burden and moderate HRQoL, suggesting a high impact of diabetes care on their lives. Treatment burden is particularly affected by regular medical care activities, whereas diabetes affects the daily functioning and emotional experiences domains of HRQoL. Further research is needed to understand how young adults make care fit and to improve care for these patients, resulting in minimally disruptive care plans. While cautiously interpreted, this may be especially relevant for women and those with adverse clinical outcomes.

Abstract Aim This study aimed to identify what young adults with type 1 diabetes (T1D) do to make diabetes care fit in their lives and the impact of diabetes and diabetes care on living. Methods Dutch young adults with T1D (18–30 years old) submitted photographed real‐life situations of efforts to make care fit and of the impact of care on their lives. Participants organised their photos in themes, which guided the focus group discussions. We added a reflective questionnaire, semi‐structured interview and iterative validation to identify participant‐defined themes and summarise the data. Results Participants ( N = 18) submitted 240 photographs in total, showing a broad range of situations and emotions. Participants identified 16 themes, grouped into four overarching categories describing their experiences with diabetes: (1) My diabetes: glucose levels, workload, 24/7 present; (2) My life: flow of (daily) life, special and irregular circumstances, life changes, body and health; (3) Support: devices and technology, social network, clinical (diabetes) care; (4) Mental aspects: emotional processes, perspective, being a patient. In the overlap of My diabetes and My life, they identified eating and counting carbohydrates, activity and exercise, recreational substances. Conclusion Young adults with T1D face the complex challenge of fitting their care into their ever‐changing lives. While support systems, such as devices, healthcare professionals and social networks can help, they can also create burdens. Participants emphasised the importance of mental health in their lives with T1D. This study highlights the need for diabetes care that acknowledges the emotional, social and practical realities of young adults' lives.

Background The occurrence of shared decision making (SDM) in daily practice remains limited. Various patient characteristics have been suggested to potentially influence the extent to which clinicians involve patients in SDM. Objective To assess associations between patient characteristics and the extent to which clinicians involve patients in SDM. Methods We conducted a secondary analysis of data pooled from 10 studies comparing the care of adult patients with (intervention) or without (control) a within-encounter SDM conversation tool. We included studies with audio(-visual) recordings of clinical encounters in which decisions about starting or reconsidering treatment were discussed. Main Measures In the original studies, the Observing Patient Involvement in Decision Making 12-items (OPTION 12 item ) scale was used to code the extent to which clinicians involved patients in SDM in clinical encounters. We conducted multivariable analyses with patient characteristics (age, gender, race, education, marital status, number of daily medications, general health status, health literacy) as independent variables and OPTION 12 as a dependent variable. Results We included data from 1,614 patients. The between-arm difference in OPTION 12 scores was 7.7 of 100 points ( P < 0.001). We found no association between any patient characteristics and the OPTION 12 score except for education level ( p = 0.030), an association that was very small (2.8 points between the least and most educated), contributed mostly by, and only significant in, control arms (6.5 points). Subanalyses of a stroke prevention trial showed a positive association between age and OPTION 12 score ( P = 0.033). Conclusions Most characteristics showed no association with the extent to which clinicians involved patients in SDM. Without an SDM conversation tool, clinicians devoted more efforts to involve patients with higher education, a difference not observed when the tool was used. Highlights Most sociodemographic patient characteristics show no association with the extent to which clinicians involve patients in shared decision making. Clinicians devoted less effort to involve patients with lower education, a difference that was not observed when a shared decision-making conversation tool was used. SDM conversation tools can be useful for clinicians to better involve patients and ensure patients get involved equally regardless of educational background.

AbstractObjectiveTo evaluate the extent to which the canonical steps of shared decision making (SDM) take place in clinical encounters in practice and across SDM forms.MethodsWe assessed 100 randomly selected video‐recorded primary care encounters, obtained as part of a randomized trial of an SDM intervention in patients with type 2 diabetes. Two coders, working independently, noted each instance of SDM, classified it as one of four problem‐based forms to SDM (weighing alternatives, negotiating conflicting issues, solving problems, or developing existential insight), and noted the occurrence and timing of each of the four canonical SDM steps: fostering choice awareness, providing information, stating preferences, and deciding. Descriptive analyses sought to determine the relative frequency of these steps across each of the four SDM forms within each encounter.ResultsThere were 485 SDM steps noted (mean 4.85 steps per encounter), of which providing information and stating preferences were the most common. There were 2.7 (38 steps in 14 encounters) steps per encounter observed in encounters with no discernible SDM form, 3.4 (105 steps in 31 encounters) with one SDM form, 5.2 (129 steps in 25 encounters) with two SDM forms, and 7.1 (213 steps in 30 encounters) when ≥3 SDM forms were observed within the encounter. The prescribed order of the four SDM steps was observed in, at best, 16 of the 100 encounters. Stating preferences was a common step when weighing alternatives (38%) or negotiating conflicts (59.3%) but less common when solving problems (29.2%). The distribution of SDM steps was similar to usual care with or without the SDM intervention.ConclusionThe normative steps of SDM are infrequently observed in their prescribed order regardless of whether an SDM intervention was used. Some steps are more likely in some SDM forms but no pattern of steps appears to distinguish among SDM forms.Clinical Trial RegistrationClinicalTrial.gov: NCT01293578.

Shared decision making (SDM) has been advocated to improve patient care, patient decision acceptance, patient-provider communication, patient motivation, adherence, and patient reported outcomes. Documentation of SDM is endorsed in several society guidelines and is a condition of reimbursement for selected cardiovascular and cardiac arrhythmia procedures. However, many clinicians argue that SDM already occurs with clinical encounter discussions or the process of obtaining informed consent and note the additional imposed workload of using and documenting decision aids without validated tools or evidence that they improve clinical outcomes. In reality, SDM is a process and can be done without decision tools, although the process may be variable. Also, SDM advocates counter that the low-risk process of SDM need not be held to the high bar of demonstrating clinical benefit and that increasing the quality of decision making should be sufficient. Our review leverages a multidisciplinary group of experts in cardiology, cardiac electrophysiology, epidemiology, and SDM, as well as a patient advocate. Our goal is to examine and assess SDM methodology, tools, and available evidence on outcomes in patients with heart rhythm disorders to help determine the value of SDM, assess its possible impact on electrophysiological procedures and cardiac arrhythmia management, better inform regulatory requirements, and identify gaps in knowledge and future needs.