Observed collaborative and intrusive parenting behaviours associated with psychosocial outcomes of adolescents with type 1 diabetes and their maternal caregivers.

AIMS: Maternal caregiver involvement is strongly associated with psychosocial and glycemic outcomes amongst adolescents with type 1 diabetes (T1D); however, previous studies have lacked detailed, objective examinations of caregiver involvement. We examined the relationship between observed parenting behaviors and psychosocial and glycemic outcomes amongst youth with T1D. METHODS: Data collected from adolescents with T1D (age 11-17) and their female caregivers as a part of a randomized controlled trial were analyzed. These included structured, observation-based scores of adolescent-caregiver dyads engaged in videotaped interactions and selected psychosocial and glycemic outcome measures. RESULTS: In adjusted analyses, higher levels of intrusive parenting behaviors during observed interactions were associated with higher diabetes distress in adolescents, but no difference in HbA1c. Associations between intrusive parenting behaviors and psychosocial outcomes were stronger for females compared to males for both diabetes distress and quality of life. Similarly, associations between collaborative parenting behaviors and quality of life were stronger for female adolescents than males. No associations were observed between collaborative parenting behaviors and glycemic outcomes. Consistent with previous work, we noted higher levels of adolescent-reported family conflict were associated with lower adolescent quality of life and higher diabetes distress with no significant difference between male and female adolescents. CONCLUSION: These findings indicate that high levels of intrusive parenting behaviors, such as lecturing or over-controlling behaviors, are associated with lower levels of adolescent well-being, particularly among adolescent girls. This work suggests that interventions to reduce intrusive parenting by maternal caregivers could result in improved psychosocial outcomes for adolescents with T1D.

No action is without its side effects: Adverse drug reactions and missed doses of antituberculosis therapy, a scoping review.

AIMS: A key reason for the failure of antituberculosis (anti-TB) treatment is missed doses (instances where medication is not taken). Adverse drug reactions (ADRs) are 1 cause of missed doses, but the global evidence, their relative contribution to missed doses vs. other causes, the patterns of missed doses due to ADRs and the specific ADRs associated with missed doses have not been appraised. We sought to address these questions through a scoping review. METHODS: MEDLINE, Embase and Web of Science were searched on 3 November 2021 using terms around active TB, missed doses and treatment challenges. Studies reporting both ADR and missed dose data were examined (PROSPERO: CRD42022295209). RESULTS: Searches identified 108 eligible studies: 88/108 (81%) studies associated ADRs with an increase in missed doses; 33/61 (54%) studies documenting the reasons for missed doses gave ADRs as a primary reason. No studies examined patterns of missed doses due to ADRs; 41/108 (38%) studies examined associations between 68 types of ADR (across 15 organ systems) and missed doses. Nuance around ADR-missed doses relations regarding drug susceptibility testing profile and whether the missed doses originated from the patient, healthcare professionals, or both were found. CONCLUSION: There is extensive evidence that ADRs are a key driver for missed doses of anti-TB treatment. Some papers examined specific ADRs and none evaluated the patterns of missed doses due to ADRs, demonstrating a knowledge deficit. Knowing why doses both are and are not missed is essential in providing targeted interventions to improve treatment outcomes.

Clinical presentation and factors associated with gluten exposure in children with celiac disease.

OBJECTIVES: The prevalence of celiac disease (CeD) is increasing, yet it is still underdiagnosed, in part because of its heterogeneous presentation. Diagnostic criteria are evolving and management with strict adherence to a gluten-free diet is challenging for many. We aimed to characterize the clinical presentation of CeD among a large multicenter cohort of pediatric patients and to identify factors associated with gluten-free diet adherence. METHODS: Patients with CeD aged 0-18 years were recruited from 11 United States health centers. Parents completed surveys about gluten-free diet adherence and patient electronic health records were reviewed. Logistic regression analyses were performed to identify risk factors associated with gluten exposure. RESULTS: Charts were reviewed for 460 children with a median age of 6.4 years. Abdominal pain was reported in 57% of the cohort, but diverse symptoms were identified. Parent surveys were completed for 455 participants. Sixty-five (14%) participants were at high risk for gluten exposure based on parental reports of weekly or daily gluten exposure or eating gluten by choice in the past year. Participants under the age of 5 years had a lower risk of gluten exposure, while participants without repeat serology testing 18 months after initial diagnosis were at higher risk of gluten exposure. CONCLUSIONS: In a large, multicenter cohort of pediatric CeD patients, clinical presentation is highly variable, necessitating a high index of suspicion to make a diagnosis. Parent surveys indicate that 14% of patients are at high risk of gluten exposure, with patient age and lack of close follow-up associated with gluten-free diet adherence.

Barriers and enablers to medication adherence in glaucoma: A systematic review of modifiable factors using the Theoretical Domains Framework.

PURPOSE: Nonadherence to medication reduces treatment effectiveness, and in chronic conditions it can significantly reduce health outcomes. In glaucoma, suboptimal adherence can lead to sight loss, which places a greater financial burden on society and reduces patients' quality of life. Interventions to improve adherence have so far had limited success and lack robust theoretical underpinnings. A better understanding of the determinants of medication adherence behaviour is needed in order to develop interventions that can target these factors more effectively. This systematic review aims to identify modifiable barriers and enablers to glaucoma medication adherence and identify factors most likely to influence adherence behaviour. RECENT FINDINGS: We searched CINAHL, MEDLINE, PsycINFO, EMBASE, the Cochrane Library and sources of grey literature up to August 2022 for studies reporting determinants of glaucoma medication adherence. Data describing modifiable barriers/enablers to adherence were extracted and analysed using the Theoretical Domains Framework (TDF), a behavioural framework consisting of 14 domains representing theoretical factors that most likely influence behaviour. Data were deductively coded into one of the TDF domains and inductively analysed to generate themes. Key behavioural domains influencing medication adherence were identified by frequency of study coding, level of elaboration and expressed importance. Eighty-three studies were included in the final synthesis. Four key domains influencing glaucoma medication adherence were identified: 'Environmental Context and Resources', 'Knowledge', 'Skills' and 'Memory, Attention and decision processes'. Frequently reported barriers included complex eyedrop regimens, lack of patient understanding of their condition, forgetfulness and difficulties administering eyedrops. Whereas simplified treatments, knowledgeable educated patients and good patient-practitioner relationships were enablers to adherence. SUMMARY: We identified multiple barriers and enablers affecting glaucoma medication adherence. Four theoretical domains were found to be key in influencing adherence behaviour. These findings can be used to underpin the development of behaviour change interventions that aim to improve medication adherence.

Predicting Long-Term Engagement in mHealth Apps: Comparative Study of Engagement Indices.

BACKGROUND: Digital health care apps, including digital therapeutics, have the potential to increase accessibility and improve patient engagement by overcoming the limitations of traditional facility-based medical treatments. However, there are no established tools capable of quantitatively measuring long-term engagement at present. OBJECTIVE: This study aimed to evaluate an existing engagement index (EI) in a commercial health management app for long-term use and compare it with a newly developed EI. METHODS: Participants were recruited from cancer survivors enrolled in a randomized controlled trial that evaluated the impact of mobile health apps on recovery. Of these patients, 240 were included in the study and randomly assigned to the Noom app (Noom Inc). The newly developed EI was compared with the existing EI, and a long-term use analysis was conducted. Furthermore, the new EI was evaluated based on adapted measurements from the Web Matrix Visitor Index, focusing on click depth, recency, and loyalty indices. RESULTS: The newly developed EI model outperformed the existing EI model in terms of predicting EI of a 6- to 9-month period based on the EI of a 3- to 6-month period. The existing model had a mean squared error of 0.096, a root mean squared error of 0.310, and an R2 of 0.053. Meanwhile, the newly developed EI models showed improved performance, with the best one achieving a mean squared error of 0.025, root mean squared error of 0.157, and R2 of 0.610. The existing EI exhibited significant associations: the click depth index (hazard ratio [HR] 0.49, 95% CI 0.29-0.84; P<.001) and loyalty index (HR 0.17, 95% CI 0.09-0.31; P<.001) were significantly associated with improved survival, whereas the recency index exhibited no significant association (HR 1.30, 95% CI 1.70-2.42; P=.41). Among the new EI models, the EI with a menu combination of menus available in the app's free version yielded the most promising result. Furthermore, it exhibited significant associations with the loyalty index (HR 0.32, 95% CI 0.16-0.62; P<.001) and the recency index (HR 0.47, 95% CI 0.30-0.75; P<.001). CONCLUSIONS: The newly developed EI model outperformed the existing model in terms of the prediction of long-term user engagement and compliance in a mobile health app context. We emphasized the importance of log data and suggested avenues for future research to address the subjectivity of the EI and incorporate a broader range of indices for comprehensive evaluation.

Randomized Controlled Trial of the Behavioral Intervention for Increasing Physical Activity in Multiple Sclerosis Project: Fidelity Monitoring and Outcomes.

Treatment fidelity is a key component for assessing the reliability and validity of clinical trials in behavioral medicine. This manuscript reports on the outcomes of a pre-planned fidelity monitoring protocol for a Phase-III clinical trial, project Behavioral Intervention for Physical Activity in Multiple Sclerosis (BIPAMS). The fidelity monitoring protocol included the five areas of the National Institutes of Health Behavior Change Consortium with primary data sources including: coaching call checklists, coaching logs, auditing of coaching calls by experts, behavioral resource bank within the treatment group, review of participant website log-ins, review of participant self-monitoring, and team meetings for discussing participant progress and protocol adherence. The fidelity monitoring protocol was implemented across six waves of participants, and a final sample of 269 participants (i.e., n = 135 in BIPAMS intervention and n = 134 in WellMS control) completed the 24-week study. Ten coaches were comprehensively trained to implement the study protocol, which included an orientation call and one-on-one behavioral coaching calls. Among BIPAMS participants, an average of 11.81/13 scheduled calls were completed, and 96 (62% of planned) were audited by an expert. Among WellMS participants, an average of 8.19/9 calls were completed, and 54 (55% of planned) audits were completed. Unplanned protocol deviations included inability to complete live call audits during the COVID-19 pandemic lockdown and changes in coaching criteria to accommodate unanticipated medical conditions and graduations. This manuscript provides an example and insights for demystifying treatment fidelity monitoring to help facilitate wide-spread use of standard protocols.

Adherence to Emergency Department Referral Criteria in a Direct-to-Consumer Telemedicine Center.

Background: The safety of direct-to-consumer telemedicine (TM) is closely related to red flag detection and correct referrals. The adherence to referral criteria from current guidelines is not well quantified. Objective: To analyze the emergency department (ED) referral rate and adherence to referral guidelines in TM encounters of acutely ill patients calling a center that adopts stewardship protocols. Methods: This is a retrospective observational unicentric study, between March 2020 and March 2022, with patients who spontaneously sought direct-to-consumer urgent virtual medical assistance. A video-based teleconsultation was provided immediately after connection. Physicians managed situations according to their clinical judgment. Current guidelines, containing specific guidance for referral if red flags were identified, were available for consultation. Physicians' semiannual performance feedback was carried out. We analyzed the patterns for referral to immediate face-to-face medical evaluation and the agreement degree with the institutional guidelines. Results: A total of 232,197 patients were available, and 14,051 (6.05%) patients were referred to ED. A total of 8,829 (68.4%) referrals were based in specific guidelines according to the International Classification of Diseases hypothesis, and 8,708 (98.6%) were justified according to guidelines. Diarrhea had the highest guidelines' adherence to referral (97.6%), followed by COVID-19 (90%), headache (84.2%), and conjunctivitis (78.8%). Policies did not support 5,222 (31.6%) referrals, though 5,100 (97.6%) of these were justified according to the doctor's clinical judgment. Conclusion: TM doctors' assessment of acutely ill patients has high rates of adherence to guidelines regarding referral. Stewardship protocol adoption provides high rates of red flag description, even in the referral of nonpolicy diseases.

Treatment Nonadherence among Multimorbid Chronic Disease Patients: Evidence from 3515 Subjects in Indonesia.

Background and Objectives: Multimorbid patients require intensive treatment for their diseases. However, little research has been given to their treatment adherence as part of its management. This study aims to determine the prevalence and characteristics of chronic disease multimorbidity in Indonesia, alongside its treatment nonadherence. Materials and Methods: We conducted a cross-sectional study using the fifth Indonesian Family Life Survey database among adult subjects aged ≥ 15 years with multimorbidity. Our descriptive and multivariate analyses include sex, age, formal education, ethnicity, geographic residence, demographic residence, household size, insurance ownership, annual income, current self-perceived health status, missing active days, smoking behavior, and body mass index. Results: We identified 3515 multimorbid patients, constituting 30.8% prevalence across chronic disease patients. Hypertension was found to be a prevalent component of multimorbidity (61.2%), followed by digestive diseases (44.5%) and arthritis (30.3%). We identified that 36.4% of the subjects were nonadherent to their chronic disease treatment. Characteristics associated with nonadherence were found to be a good self-perception of health (aOR 1.79, 95% CI 1.54-2.08), active smoking behavior (aOR 1.51, 95% CI 1.14-1.99), no smoking behavior (aOR 1.44, 95% CI 1.08-1.90), missing seven active/productive days or less in the past month due to poor health (aOR 1.36, 95% CI 1.10-1.68), no insurance ownership (aOR 1.20, 95% CI 1.04-1.39), age of 15-65 years (aOR 1.25, 95% CI 1.01-1.55), income below IDR 40 million (aOR 1.23, 95% CI 1.04-1.46), and household size of 2-6 people (aOR 1.17, 95% CI 1.01-1.36). Conclusions: While the prevalence of multimorbidity in Indonesia is generally similar to that observed in previous studies, we have identified patient characteristics related to nonadherence. We suggest that patient's nonadherence was primarily dictated by their self-perception of health and treatment complexity. With the longstanding issue of nonadherence, this study indicated the need to consider creating patient-tailored treatment programs in clinical practice to improve adherence by considering individual patients' characteristics.

A Qualitative Exploration of Barriers to Treatment Among HPV-Positive Women in a Cervical Cancer Screening Study in Western Kenya.

BACKGROUND: Cervical cancer screening through self-collected high-risk human papillomavirus (HPV) testing has increased screening uptake, particularly in low-resource settings. Improvement ultimately depends, however, on women with positive results accessing follow-up treatment. Identifying the barriers to timely treatment is needed to tailor service delivery for maximum impact. MATERIALS AND METHODS: This qualitative study was conducted within a self-collected HPV screening trial in Migori County, Kenya. HPV-positive women were referred for no-cost cryotherapy treatment at the county hospital. Women not attending within 60 days of receiving HPV-positive results were randomly selected for in-depth interviews (IDIs). IDIs were coded and analyzed to develop an analytical framework and identify treatment barriers. RESULTS: Eighty-one women were interviewed. IDIs showed a poor understanding of HPV and cervical cancer, impacting comprehension of screening results and treatment instructions. All 81 had not undergone treatment but reported intending to in the future. Eight reported seeking treatment unsuccessfully or not qualifying, primarily due to pregnancy. Transportation costs and long distances to the hospital were the most reported barriers to treatment. Other obstacles included work, household obligations, and fear of treatment. Impacts of social influences were mixed; some women reported their husbands prevented seeking treatment, others reported their husbands provided financial or emotional support. Few women experienced peer support. CONCLUSIONS: Women faced many barriers to treatment following HPV screening in rural Kenya. Transportation barriers highlight a need for local treatment capacity or screen-and-treat approaches. Ensuring women understand their results and how to seek treatment is essential to improving cervical cancer screening in low-resource settings.

Determinants of adherence to daily PrEP measured as intracellular tenofovir diphosphate concentrations over 24 months of follow-up among men who have sex with men.

OBJECTIVES: Adherence is key to the effectiveness of oral pre-exposure prophylaxis (PrEP) to prevent HIV. Therefore, we aimed to explore factors associated with adherence to daily PrEP (dPrEP). METHODS: Men who have sex with men (MSM) using dPrEP (emtricitabine/tenofovir disoproxil) within the Amsterdam PrEP demonstration project at the Public Health Service of Amsterdam, provided dried blood spots (DBS) 12 and 24 months after PrEP initiation. From DBS, we determined intracellular tenofovir diphosphate (TFV-DP) concentrations to assess adherence; TFV-DP ≥700 fmol/punch was considered adequate. We assessed associations of sociodemographic, clinical and behavioural characteristics with TFV-DP concentrations using multivariable linear regression. RESULTS: Of 263 participants who attended 12-month or 24-month study visits while on dPrEP, 257 (97.7%) provided DBS at one or both visits (492 DBS in total). Median TFV-DP concentration was 1299 (IQR 1021-1627) fmol/punch (12 months: 1332 (1087-1687); 24 months: 1248 (929-1590]). Higher TFV-DP concentrations were associated with: older age (p=0.0008), condomless anal sex with a casual partner in 6 months preceding PrEP initiation (+166 fmol/punch; 95% CI 36.5 to 296) and using a mobile application providing visualised feedback on PrEP use and sexual behaviour (+146 fmol/punch; 95% CI 28.1 to 263). Lower TFV-DP concentrations were associated with longer duration of PrEP use (24 vs 12 months; -91.5 fmol/punch; 95% CI -155 to -28.1). Time-updated number of sex partners, diagnosed STIs and chemsex were not associated with TFV-DP concentrations. CONCLUSIONS: Overall, TFV-DP concentrations were high among MSM using dPrEP, indicating excellent adherence. Especially older participants, those who reported condomless anal sex with a casual partner prior to PrEP initiation and those who used an app with visualised feedback showed higher levels of adherence. As TFV-DP concentrations had decreased slightly at 2 years of PrEP use when compared with 1 year, we emphasise the importance of adherence counselling to those who continue using PrEP. TRIAL REGISTRATION NUMBER: NL5413.

Transition readiness among adolescents and young adults with haemophilia in the Netherlands: Nationwide questionnaire study.

INTRODUCTION: Care for adolescents with haemophilia is transferred from paediatric to adult care around the age of 18 years. Transition programs help to prepare adolescents for this transfer and prevent declining treatment adherence. Evaluating transition readiness may identify areas for improvement. OBJECTIVE: Assess transition readiness among Dutch adolescents and young adults with haemophilia, determine factors associated with transition readiness, and identify areas of improvement in transition programs. METHODS: All Dutch adolescents and young adults aged 12-25 years with haemophilia were invited to participate in a nationwide questionnaire study. Transition readiness was assessed using multiple-choice questions and was defined as being ready or almost ready for transition. Potential factors associated with transition readiness were investigated, including: socio-demographic and disease-related factors, treatment adherence, health-related quality of life, and self-efficacy. RESULTS: Data of 45 adolescents and 84 young adults with haemophilia (47% with severe haemophilia) were analyzed. Transition readiness increased with age, from 39% in 12-14 year-olds to 63% in 15-17 year-olds. Nearly all post-transition young adults (92%, 77/84) reported they were ready for transition. Transition readiness was associated with treatment adherence, as median VERITAS-Pro treatment adherence scores were worse in patients who were not ready (17, IQR 9-29), compared to those ready for transition (11, IQR 9-16). Potential improvements were identified: getting better acquainted with the adult treatment team prior to transition and information on managing healthcare costs. CONCLUSIONS: Nearly all post-transition young adults reported they were ready for transition. Improvements were identified regarding team acquaintance and preparation for managing healthcare costs.

Impact of pre-existing mental health disorders on the receipt of guideline recommended cancer treatments: A systematic review.

OBJECTIVE: Disparities in cancer outcomes for individuals with pre-existing mental health disorders have already been identified, particularly for cancer screening and mortality. We aimed to systematically review the influence on the time from cancer diagnosis to cancer treatment, treatment adherence, and differences in receipt of guideline recommended cancer treatment. METHODS: We included international studies published in English from 1 January 1995 to 23 May 2022 by searching MEDLINE, Embase, and APA PsycInfo. RESULTS: This review identified 29 studies with 27 being published in the past decade. Most studies focused on breast, non-small cell lung and colorectal cancer and were of high or medium quality as assessed by the Newcastle Ottawa Scale. All studies were from high-income countries, and mostly included patients enrolled in national health insurance systems. Five assessed the impact on treatment delay or adherence, and 25 focused on the receipt of guideline recommended treatment. 20/25 studies demonstrated evidence that patients with pre-existing mental health disorders were less likely to receive guideline recommended therapies such as surgery or radiotherapy. In addition, there was a greater likelihood of receiving less intensive or modified treatment including systemic therapy. CONCLUSIONS: Across different cancer types and treatment modalities there is evidence of a clear disparity in the receipt of guideline recommended cancer treatment for patients with pre-existing mental health disorders. The effect of pre-existing mental health disorders on treatment delay or adherence is under-researched. Future research needs to include low- and middle-income countries as well as qualitative investigations to understand the reasons for disparities in cancer treatment.

Assessing the impact of implementing multiple adherence measures to antiretroviral therapy from dispensing data: a short report.

Pharmacy dispensing data are useful for estimating adherence to therapy. Here, we implement multiple adherence measures to antiretroviral therapy (ART) and provide an online tool for visualising results. We conducted a cohort study for 2,042 people dispensed ART in Australia. We assessed adherence using the Proportion of Days Covered (PDC) within 360 days of follow-up as a continuous measure and dichotomised (PDC ≥80%). We defined a covered day as the 1) exposure to ≥3 antiretrovirals at the same time 2) exposure to any antiretroviral 3) lowest number of days covered per antiretroviral 4) average of days covered over all antiretrovirals 5) highest number of days covered per antiretroviral. For each method, we conducted sensitivity analyses. The median PDC ranged between 93.3%-98.3%. Between 67.0%-87.7% of individuals were classified as adherent, with higher values for measure 2 (85.5%-89.7%) and lower values for measure 3 (67.0%-70.9%). Censoring loss to follow-up had a higher impact on adherence estimates than considering a grace period. The variation in adherence estimates can be substantial, especially when dichotomising adherence. Researchers should consider operationalising multiple measures to estimate adherence bounds and identify a range of people at risk of non-adherence for targeted interventions.

Adherence to antiretroviral therapy and factors associated with non-adherence: a cohort study at two referral services in Brazil.

This cohort study evaluated non-adherence to antiretrovirals at referral services in Pernambuco, Brazil, 2016/2017, through self-report. A generalized mixed-effects model for binary outcomewas used. We assessed 542 participants with an adherence rate of 85.50%. A greater chance of non-adherence was associated with:a low/moderate level of nicotine dependence (OR = 2.79, p = 0.00, IC = 1.44-5.41); ≥7 tablets/day (OR = 6.14, p = 0.00, IC = 3.42-11.02); LPV/r (OR = 1.49, p = 0.6, IC = 0.98-2.26), ddI (OR = 3.34, p = 0.03, IC = 1.12-9.97), ABC (OR = 4.02, p = 0.05, IC = 1.01-16.03), RAL (OR = 2.49, p = 0.01, IC = 1.32-4.70) and DTG (OR = 4.65, p = 0.01, IC = 1.42-15.16); 6-10 year seropositive diagnosis (OR = 2.17, p = 0.01, IC = 1.20-3.92) and symptoms of depression (OR = 1.55, p = 0.03, IC = 1.03-2.33). Protective factors for non-adherence weres: ≥50 years (OR = 0.67, p = 0.06, IC = 0.45-1.01), secondary/higher education (OR = 0.48, p = 0.00, IC = 0.34-0.70), embarrassment at health service (OR = 0.49, p = 0.04, IC = 0.24-0.97), good understanding of antiretrovirals (OR = 0.62, p = 0.03, IC = 0.40-0.96), adverse event (OR = 0.74, p = 0,06, IC = 0.54-1.01), use of TDF (OR = 0.62, p = 0.01, IC = 0.43-0.90), NVP (OR = 0.41, p = 0.05, IC = 0.71-1.00) and EFZ (OR = 0.48, p = 0.01, IC = 0.29-0.80) and good knowledge of HIV/AIDS/ART. (OR = 0.67, p = 0.07, IC = 0.43-1.04). Variables with stronger association were those linked to ART. Systematic use of self-report adherence is recommended for priority groups.

What are patients' experiences of discontinuing clozapine and how does this impact their views on subsequent treatment?

BACKGROUND: Discontinuing what is considered the most effective treatment for treatment-resistant schizophrenia may precipitate feelings of failure or a relapse of illness. Clozapine treatment is discontinued for a variety of reasons, including non-adherence, intolerance, or lack of efficacy. Patients' experiences of discontinuing the "best" treatment and the impact on perceptions of subsequent antipsychotic treatment are important in developing an understanding of the factors affecting people's treatment choices. This study is the first of its type, seeking to explore people's perspectives on clozapine discontinuation. METHOD: Semi-structured interviews with sixteen patients who had received clozapine and discontinued treatment-thirteen males and three females, age range: thirty-two to seventy-eight years old-were audio-recorded and transcribed. A modified inductive approach to analysis, based on grounded theory, was taken to identify commonalities and differences in patients' perceptions. RESULTS: The three main themes identified from participants' experiences were: (1) positive and negative effects of treatment; (2) feelings of agency, being the capacity to make decisions about treatment and act independently; (3) choice of treatment in the future. Participants exhibited agency in making choices about medication, including risking relapse, while attempting self-management of medication effects. Different participants perceived the same side effect as beneficial or intolerable. Variation in subsequent treatment choices was reported, with some participants favouring depot (long-acting) injections. A participant was frightened when not told about clozapine's side effects, which led to the participant not being engaged in future treatment decisions. Others, despite suffering serious adverse effects, retained positive perceptions of clozapine; they experienced despair at finding an effective alternative. CONCLUSIONS: Experiences with clozapine discontinuation evoked powerful emotions and resulted in clozapine being the benchmark for other treatments. Knowledge, agency, and being in control were important to participants in relation to treatment. Personal perceptions of treatments or beliefs about illness could lead to non-adherence. People value the clinician listening to their experiences to better understand their perspective, enabling concerns about medication to be addressed through true shared decision making. TRIAL REGISTRATION: NHS Health Research Authority and Health and Care Research Wales, IRAS Project ID 225753, Research Ethics Committee (REC) reference: 18/NW/0413, 25/06/2018.

Factors Impacting Access and Engagement of Cognitive Remediation Therapy for People with Schizophrenia: A Systematic Review.

OBJECTIVES: Neurocognitive deficits are central in schizophrenia. Cognitive remediation has proven effective in alleviating these deficits, with medium effect sizes. However, sizeable attrition rates are reported, with the reasons still uncertain. Furthermore, cognitive remediation is not part of routine mental health care. We conducted a systematic review to investigate factors that influence access and engagement of cognitive remediation in schizophrenia. METHODS: We systematically searched the PubMed, Web of Science, and PsycINFO databases for peer-reviewed articles including a cognitive remediation arm, access, and engagement data, and participants with schizophrenia spectrum disorders aged 17-65 years old. Duplicates and studies without a distinct cognitive remediation component, protocol papers, single case studies, case series, and reviews/meta-analyses were excluded. RESULTS: We included 67 studies that reported data on access and engagement, and extracted quantitative and qualitative data. Access data were limited, with most interventions delivered on-site, to outpatients, and in middle- to high-income countries. We found a median dropout rate of 14.29%. Only a small number of studies explored differences between dropouts and completers (n = 5), and engagement factors (n = 13). Dropouts had higher negative symptomatology and baseline self-efficacy, and lower baseline neurocognitive functioning and intrinsic motivation compared to completers. The engagement was positively associated with intrinsic motivation, self-efficacy, perceived usefulness, educational level, premorbid intelligence quotient, baseline neurocognitive functioning, some neurocognitive outcomes, and therapeutic alliance; and negatively associated with subjective cognitive complaints. Qualitative results showed good acceptability of cognitive remediation, with some areas for improvement. CONCLUSIONS: Overall, access and engagement results are scarce and heterogeneous. Further investigations of cognitive remediation for inpatients, as well as remote delivery, are needed. Future clinical trials should systematically explore attrition and related factors. Determining influential factors of access and engagement will help improve the implementation and efficacy of cognitive remediation, and thus the recovery of people with schizophrenia.

Adherence to continuous positive airway pressure treatment in a cohort of elderly adults with newly diagnosed obstructive sleep apnea.

PURPOSE: To evaluate adherence to continuous positive airway pressure (CPAP) treatment in elderly patients newly diagnosed with obstructive sleep apnea syndrome (OSAS). METHODS: Consecutive patients ≥ 70 years attending one of the participating centers, requiring CPAP treatment and agreeing to participate, were included. Mean hours of CPAP during the first 5 months of treatment defined adherence as CPAP ≥ 4 h/day on 70% of nights over a 30-day period. RESULTS: From January 2014 to April 2019, 262 patients aged between 76.7 and 87.7 years (mean age, 82.6 years) were included and fully evaluated; 224 (85.5%) were adherent. Mean adherence time was 6.9 h in adherent patients, vs 2 h in non-adherent patients (p < 0.0001). Compared to non-adherent patients, adherent patients tended to have higher baseline AHI without reaching statistical significance (44.7 vs 39.5, p = 0.0913). They less frequently presented with dementia (3.7% vs 21.6%, p < 0.0001). The somnolence (ODSI and Epworth), nocturia, and depression (QD2A) scores of adherent patients improved significantly from baseline to the fifth month: ODSI decreased from 7 to 3.7 (p < 0.0001), Epworth from 8.7 to 6.2 (p < 0.0001), nocturia from 6.6 to 4.1 (p = 0.0015), and QD2A from 3.7 to 3 (p = 0.0025). Many more patients in the non-adherent group used nasal plugs than in the adherent group (14.7% vs 2.1%, p = 0.0006). CONCLUSION: The present real-world study showed the ability of newly diagnosed elderly adults (including the very old) to adhere to CPAP therapy and the benefit of 5 months' well-conducted CPAP treatment. REGISTRATION NUMBER: Not applicable.

Adherence to continuous positive airway pressure therapy in patients with spinal cord injury and obstructive sleep apnea: trajectories and predictors.

PURPOSE: To identify specific determinants of non-adherence or cessation of continuous positive airway pressure (CPAP) therapy in a population of patients with spinal cord injuries (SCI). METHODS: Retrospective analysis of data from patients with SCI who underwent a full night supervised polysomnography between 2015 and 2021 and presented with moderate to severe obstructive sleep apnea (OSA) and for whom CPAP was indicated. Adherence was studied at 1, 6, and 12 months. Univariate and multivariate analyses were performed to identify factors associated with non-adherence (< 4 h per night or CPAP cessation). Factors studied were demographic and disease-related data and both subjective and objective sleep parameters. RESULTS: A total of 60 patients were included (40% cervical SCI). In univariate analysis, the only predictive parameters of non-adherence observed at 1, 6, and 12 months were the average use of CPAP on the 1st night (p = 0.02) and over the 1st week (p ≤ 0.001). A complete lesion (AIS-A) was predictive of non-adherence at 1 and 6 months (p = 0.02 at 6 months), while mask leakage was associated with non-adherence at 12 months (p = 0.02). Upper limb autonomy and the presence of family caregivers did not appear to be protective. In multivariate analysis, only the average use in the first week remained predictive of adherence (> 4 h) in the short, medium and long term. CONCLUSION: In patients with SCI and OSA, the 1st week of CPAP treatment seems to be determinant of short-, medium-, and long-term CPAP adherence. Support for SCI patients from the start of treatment is essential and may help avoid treatment failures.

Experiences of stigma and HIV care engagement in the context of Treat All in Rwanda: a qualitative study.

BACKGROUND: 'Treat All' policies recommending immediate antiretroviral therapy (ART) soon after HIV diagnosis for all people living with HIV (PLHIV) are now ubiquitous in sub-Saharan Africa. While early ART initiation and retention is effective at curtailing disease progression and transmission, evidence suggests that stigma may act as a barrier to engagement in care. This study sought to understand the relationships between HIV stigma and engagement in care for PLHIV in Rwanda in the context of Treat All. METHODS: Between September 2018 and March 2019, we conducted semi-structured, qualitative interviews with adult PLHIV receiving care at two health centers in Kigali, Rwanda. We used a grounded theory approach to data analysis to develop conceptual framework describing how stigma influences HIV care engagement in the context of early Treat All policy implementation in Rwanda. RESULTS: Among 37 participants, 27 (73%) were women and the median age was 31 years. Participants described how care engagement under Treat All, including taking medications and attending appointments, increased their visibility as PLHIV. This served to normalize HIV and use of ART but also led to high levels of anticipated stigma in the health center and community at early stages of treatment. Enacted stigma from family and community members and resultant internalized stigma acted as additional barriers to care engagement. Nonetheless, participants described how psychosocial support from care providers and family members helped them cope with stigma and promoted continued engagement in care. CONCLUSIONS: Treat All policy in Rwanda has heightened the visibility of HIV at the individual and social levels, which has influenced HIV stigma, normalization, psychosocial support and care engagement in complex ways. Leveraging the individual and community support described by PLHIV to deliver evidence-based, peer or provider-delivered stigma reduction interventions may aid in attaining Treat All goals.

Can pharmacotherapeutic follow-up after allogeneic hematopoietic stem cell transplantation improve medication compliance?

BACKGROUND: Allogeneic Hematopoietic Stem Cell Transplantation (allo-HSCT) is currently one of the most effective therapies in onco-hematology. For the treatment of the disease and prevention of such complications, a complex pharmacotherapeutic regimen is employed. Non-compliance is prevalent among adolescents and young adults with chronic hematological diseases, being reported by up to 50% of the patients. OBJECTIVE: To evaluate the results of pharmacotherapeutic follow-up on medication compliance and on the knowledge about pharmacotherapy of patients who underwent allo-HSCT. METHODS: A single-arm, open-label and non-randomized intervention study developed in an allo-HSCT outpatient clinic. The participants attended pharmaceutical consultations and had their knowledge about pharmacotherapy and medication compliance measured by MedTake and Brief Medication Questionnaire (BMQ), respectively. RESULTS: A total of 27 patients attended pharmaceutical consultations (4.81 consultations/patient; SD = 1.80). There was an improvement in medication compliance and in knowledge between the first and last consultations (p < 0.05). In the final consultation, 70.37% of the patients showed compliance, with a knowledge rate of 98.35% (SD = 3.63). Non-compliant individuals presented a greater tendency to hospital readmissions. There was no relationship between medication compliance and sociodemographic variables, graft-versus-host disease, and knowledge about pharmacotherapy. CONCLUSIONS: Pharmacotherapeutic follow-up contributed to improving medication compliance. Knowledge about pharmacotherapy alone does not translate into behaviors, which corroborates the complexity of the biopsychosocial factors associated with medication compliance.