Perceptions of Treatment Burden Among Caregivers of Elders With Diabetes and Co-morbid Alzheimer’s Disease and Related Dementias: A Qualitative Study

Many older adults with diabetes (DM) have co-occurring Alzheimer’s Disease (AD) and AD-Related Dementias (ADRD). Complex treatment plans may impose treatment burden for caregivers responsible for day-to-day self-management. The purpose of this qualitative study was to describe caregiver perceptions of treatment burden for people with DM-AD/ADRD. Caregivers ( n = 33) of patients with DM-AD/ADRD participated in semi-structured interviews about their caregiver role and perceptions of treatment burden of DM-AD/ADRD management. Qualitative data were analyzed using content analysis (ATLAS.ti). Caregivers reported high levels of burden related to complex treatment/self-management for patients with DM-AD/ADRD that varied day-to-day with the patient’s cognitive status. Four themes were: (1) trajectory of treatment burden; (2) navigating multiple healthcare providers/systems of care; (3) caregiver role conflict; and (4) emotional burden. Interventions to reduce caregiver treatment burden should include activating supportive services, education, and care coordination especially, if patient treatment increases in complexity over time.

Danish validation of the Multimorbidity Treatment Burden Questionnaire (MTBQ) and findings from a population health survey: a mixed-methods study

ObjectiveTo validate the Danish Multimorbidity Treatment Burden Questionnaire (MTBQ) and obtain a population-based evaluation of treatment burden.DesignMixed-methods.SettingDanish population-based survey.ParticipantsTranslation by professional translators and an expert group. The scale was tested by 13 407 participants (aged ≥25 years) in treatment.MeasuresThe 10-item MTBQ was translated into Danish using forward-backward translation and used in a large population health survey. A global MTBQ score was calculated and factor analysis and Cronbach’s alpha assessed dimensional structure and internal consistency reliability, respectively. Spearman’s rank correlations between global MTBQ scores and scores of self-rated health, health-related quality of life and the number of long-term conditions, respectively, assessed construct validity. MTBQ scores were grouped into four categories (no, low, medium, high burden) to assess interpretability and population-based evaluation of treatment burden.ResultsThe scale showed high internal consistency (α=0.87), positive skewness and large floor effects. Factor analysis supported a one-dimensional structure of the scale with a three-dimensional structure as a less parsimonious alternative. The MTBQ score was negatively associated with self-rated health (rS−0.45, p<0.0001) and health-related quality of life (rS−0.46/−0.51, p<0.0001), and positively associated with the number of long-term conditions (rS 0.26, p<0.0001) and perceived stress (rS 0.44, p<0.0001). Higher treatment burden was associated with young age, male sex, high educational level, unemployment, being permanently out of work, not living with a spouse/cohabitant, living with child(ren) and long-term conditions (eg, heart attack, stroke, diabetes and mental illness).ConclusionThe Danish MTBQ is a valid measure of treatment burden with good construct validity and high internal reliability. This is the first study to explore treatment burden at a population level and provides important evidence to policy makers and clinicians about sociodemographic groups at risk of higher treatment burden.

Optimal duration of antibiotic treatment for community-acquired pneumonia in adults: a systematic review and duration-effect meta-analysis

ABSTRACTImportanceCommunity-acquired pneumonia (CAP) is a leading cause of morbidity and mortality globally. The optimal duration of antimicrobial therapy remains unclear and controversial.ObjectiveTo find the optimal treatment duration with antibiotics for CAP in adults.Data SourcesMEDLINE, Embase and CENTRAL from inception to present (25 August, 2021).Study SelectionAll randomized controlled trials comparing the same antibiotics used at the same daily dosage but for different durations for CAP in adults. We included any antibiotics, administered orally or intravenously. We included both outpatients and inpatients but not those admitted to intensive care unit.Data Extraction and SynthesisTwo review authors independently screened and extracted data. We conducted random-effects, one-stage duration-effect meta-analysis with restricted cubic splines. We tested the non-inferiority with the pre-specified non-inferiority margin of 10% examined against 10 days using intention-to-treat dataset.Main Outcomes and MeasuresThe primary outcome was clinical improvement at day 15 (range 7-45 days). Secondary outcomes were all-cause mortality, serious adverse events, and clinical improvement at day 30 (15-60 days). We calculated odds ratios.ResultsWe included 9 trials (2399 patients with a mean [SD] age of 61.2 [22.1]; 39% women). The duration-effect curve was monotonic with longer duration leading to lower probability of improvement, and the lower 95%CI curve was constantly above the prespecified non-inferiority margin throughout the examined duration. Harmful outcome curves indicated no association. The average percentage of clinical improvement rate at day 15 in the 10-day treatment arms was 68%. Using that average, we computed the absolute clinical improvement rates at the following durations: a 3-day treatment 75% (95%CI: 68 to 81%), 5-day treatment 72% (66 to 78%), and 7-day treatment 69% (61 to 76%).Conclusions and RelevanceShorter treatment duration probably achieves the optimal balance between efficacy and treatment burden for treating CAP in adults. However, the small number of included studies and the overall moderate to high risk of bias may compromise the certainty of the results. Further research focusing on the shorter duration range is required.RegistrationPROSPERO (CRD 42021273357).KEY POINTSQuestionWhat is the optimal treatment duration of antibiotics for community-acquired pneumonia (CAP) in adults.?FindingsThis systematic review and duration-effect meta-analysis of 9 trials with 2399 patients found that the shorter treatment duration (3-9 days) was likely to be non-inferior to the standard treatment duration (10 days) for CAP in adults if they achieved clinical stability.MeaningShorter antibiotic treatment duration probably achieves the optimal balance between efficacy and treatment burden for CAP in adults.

Development of an Insulin Pen is a Patient-Centric Multidisciplinary Undertaking: A Commentary

The goal of human-centered insulin pen design is to relieve the treatment burden of a chronic condition and help affected individuals to feel free of disease. The patient as well as their entire ecosystem should be considered. At Novo Nordisk A/S, we believe that embedding human-centered design at the heart of our development processes is best achieved with multidisciplinary experts in-house to work alongside product development teams and, importantly, the end user. Novo Nordisk introduced the first commercially available insulin pen in 1985 and has continued to develop reusable/durable and prefilled insulin pens to meet different patient needs, through to the latest NovoPen 6 and NovoPen Echo Plus with SMART technology. Human-centered design is essential for delivering meaningful and practical solutions for individuals with diabetes.

Change in treatment burden among people with multimorbidity: Protocol of a follow up survey and development of efficient measurement tools for primary care

Background Treatment burden is the effort required of patients to look after their health and the impact this has on their functioning and wellbeing. It is likely treatment burden changes over time as circumstances change for patients and health services. However, there are a lack of population-level studies of treatment burden change and factors associated with this change over time. Furthermore, there are currently no practical screening tools for treatment burden in time-pressured clinical settings or at population level. Methods and analysis This is a three-year follow-up of a cross-sectional survey of 723 people with multimorbidity (defined as three or more long-term conditions; LTCs) registered at GP practices in in Dorset, England. The survey will repeat collection of information on treatment burden (using the 10-item Multimorbidity Treatment Burden Questionnaire (MTBQ) and a novel single-item screening tool), sociodemographics, medications, LTCs, health literacy and financial resource, as at baseline. Descriptive statistics will be used to compare change in treatment burden since the baseline survey in 2019 and associations of treatment burden change will be assessed using regression methods. Diagnostic test accuracy metrics will be used to evaluate the single-item treatment burden screening tool using the MTBQ as the gold-standard. Routine primary care data (including demographics, medications, LTCs, and healthcare usage data) will be extracted from medical records for consenting participants. A forward-stepwise, likelihood-ratio logistic regression model building approach will be employed in order to assess the utility of routine data metrics in quantifying treatment burden in comparison to self-reported treatment burden using the MTBQ. Impact To the authors’ knowledge, this will be the first study investigating longitudinal aspects of treatment burden. Findings will improve understanding of the extent to which treatment burden changes over time for people with multimorbidity and factors contributing to this change, as well as allowing better identification of people at risk of high treatment burden.

Successful Treatment with Emicizumab of Patient with Type 2N Normandy and Severe Hemophilia a

It is unusual to have both Type 2N VWD and severe hemophilia A. Type 2N (Normandy) von Willebrand Disease (VWD) is an uncommon recessive disorder resulting in a defect in the binding site of von Willebrand Factor (VWF) with factor VIII. Factor VIII plasma levels are low due to rapid clearance. Our patient has severe hemophilia A (factor VIII &lt;1%; Inversion 22) with no history of inhibitors and is heterozygous for a known pathogenic mutation (c2560C&gt;T; p. Arg854Trp) Type 2N "Normandy". He benefited from the use of HEMLIBRA® (Emicizumab-kxwh, Genentech) a humanized bispecific monoclonal antibody with a long half-life independent of VWF interaction. The patient was diagnosed at 11 months old with excessive bleeding from his frenulum and began episodic standard factor VIII. He had 10 bleeds including knees, arms and hamstring before starting prophylaxis at 3 yrs. of age. On ADVATE 50 units/kg/dose twice a week he had nose bleeds, soft tissue bleeds, and joint bleeds. At 11 yrs. of age, the nose bleeds increased daily. VWD testing revealed VWF activity 25%, VWF Antigen 42%, Factor VIII &lt;1% and Normal Multimers with Type 2 Normandy genotype. ALPHANATE® (Anti-hemophiliac factor/von Willebrand factor complex (human), Grifols) prophylaxis was started to address mucosal bleeding however the right elbow synovitis progressed to right elbow contracture and bone cyst on MRI. He returned briefly to ADVATE® 50 units/kg MWF to every other day prophylaxis with continued intermittent bleeding in right elbow joint. With the diagnosis of Type 2N, and the availability of VONVENDI ® (Recombinant von Willebrand factor, Takeda), he was placed on ADYNOVATE® (Antihemophilic Factor Recombinant PEGylated, Takeda) daily and VONVENDI® every 3rd day starting at 14 yrs. old. The combination of ADYNOVATE® every 12-24 hours with VONVENDI® daily to every other day improved his acute bleeding episodes including his nose bleeds (Half-life ADONYVATE®+VONVENDI® 9.25 hr. vs. Half-life ADVATE® 5.5 hr.). The patient continued to participate in high-risk activities such as playing on trampoline which contributed to his injuries but his family felt the treatment was better than previous therapies. After considering the treatment burden of 2 types of factors more than 5 times a week and progression of synovitis in right elbow joint, the patient was started on HEMLIBRA® with weekly subcutaneous injections. Four weeks of loading dose (3 mg/kg/dose) was followed by once per week prophylaxis at standard dosing 1.5 mg/kg weekly. The first bleeding episode on HEMLIBRA® was reported after tooth restoration October 2019. After receiving both ADYNOVATE® and VONVENDI® pre-op, he developed swelling with suspected hematoma at the angle of his jaw about 4 days post-op treated successfully with ADYNOVATE® /VONVENDI®. In April 2020, he had right elbow pain stereotypic of a joint bleeding episode after yard work which was treated successfully with ADYNOVATE® /VONVENDI®. No report of severe nosebleeds. To our knowledge this is the first example of successful use of HEMLIBRA® in a patient with Type 2N VWD and severe hemophilia A. It is unclear why the ALPHANATE® was not clinically effective however the combination of VONVENDI® and ADYNOVATE® provided improved hemostasis with frequent infusions and high cost before the start of HEMLIBRA®. HEMLIBRA once a week has significantly reduced the treatment burden and improved bleeding prevention. The genotype of this patient is unusual however this approach may be successful in other types of VWD that result in significant bleeding phenotype. Figure 1 Figure 1. Disclosures Bryant: Novo Nordisk: Consultancy, Honoraria; Bristol Myers Squib: Consultancy, Honoraria; Hema Biologics: Consultancy, Honoraria. Carr: Genentech: Speakers Bureau; Bayer: Speakers Bureau; Medexus: Speakers Bureau.

Liminal Space of First-Episode Psychosis: Health Management and Its Effect on Social Participation

Importance: Managing health requires extensive time and effort, especially in the early stages of a new illness. Although important, health management occupations contribute to treatment burden, disrupt engagement in other occupations, and galvanize the incorporation of the illness into identity. This is especially true for young adults after first-episode psychosis (FEP). Objective: To explore the impact of health management occupations on the social participation of young adults after FEP. Design: Qualitative study. Setting: Community with participants from primarily urban environments. Participants: Five adults between 18 and 30 yr old who experienced FEP within the previous 5 yr. Data collection occurred through semistructured interviews, participant observations, and discourse elicitation. Outcomes and Measures: Two participant observations per month for 6 mo with 4 study participants; six observations total for a 5th participant. Results: Health management dominated participants’ occupations immediately after FEP and hindered their social participation as they experienced a liminal space (i.e., transition space) in their life trajectory. Some participants were “stuck” in this space and deferred life goals to focus on illness management, whereas others used the liminal space as a space for growth and transformation. Conclusions and Relevance: Health management occupations are essential; however, overemphasizing health management can hinder social participation and quality of life. Occupational therapy practitioners can assist clients with moving through liminal spaces after diagnosis by supporting participation beyond mental health treatment environments, helping clients to imagine alternative life trajectories, and finding strategies to reduce overall treatment burden. What This Article Adds: The concept of liminality holds promise for understanding and supporting health management and social participation after FEP.