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Adherence to Multiple Treatment Recommendations in Adolescents and Young Adults with Cancer: A Mixed Methods, Multi-Informant Investigation.

ABSTRACT: Purpose: This mixed methods study sought to assess adolescent and young adult (AYA) adherence to three cancer treatment recommendations (medications, diet, physical activity), and determine the individual, family, and health system factors associated with suboptimal adherence. Methods: In Stage 1, 72 AYA-caregiver dyads completed a validated adherence interview and surveys about individual and family functioning. Matched providers (n = 34 who reported on 61 AYAs) completed global adherence ratings through survey. In Stage 2, a subset (n = 31) completed qualitative interviews. Results: Medication adherence was higher (M = 94.8%) than diet (M = 73.9%) and physical activity (M = 55.4%), although ≥50% demonstrated "Imperfect Adherence" for each subtask. Univariately, AYAs who missed a medication had more depressive symptoms, worse health-related quality of life (HRQOL), and more medication barriers; their families had more financial stress, worse family functioning, and lower self-efficacy. The odds of adhering to medications were lower with worse HRQOL (odds ratio [OR] = 1.08; 95% confidence interval [CI], 1.02-1.15) and family functioning (OR = 0.18; 95% CI, 0.04-0.91). The odds of adhering to physical activity and diet were lower with worse family functioning (OR = 0.09; 95% CI, 0.01-0.91) and more barriers (OR = 0.24, CI: 0.10-0.61), respectively. Qualitative themes further supported multilevel influences on AYA adherence. Conclusions: Adherence challenges were identified across medications, diet, and physical activity. Multilevel contextual factors were associated with suboptimal adherence, including poorer HRQOL and family functioning. Findings support the need to improve clinical adherence assessment and develop contextually tailored interventions.

SUBMITTER: Psihogios AM

PROVIDER: S-EPMC7864108 | biostudies-literature |

REPOSITORIES: biostudies-literature

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Project description:BackgroundWe assessed the associations between metabolic control and adherence and a broad range of adolescent and family characteristics (e.g., gender, family structure), treatment-related variables (e.g., disease duration, treatment modality), and psychosocial factors (e.g., symptoms of depression and anxiety, parental support, self-efficacy) in a nationwide study of Danish adolescents (age 12-17 years) with type 1 diabetes mellitus (T1DM).MethodsSixty-four percent of invited families participated by completing a survey and providing a blood sample. Two path models of associations between generic and diabetes-related family factors, adolescent self-efficacy, emotional difficulties, and metabolic control and adherence were tested, one for adolescents and one for caregivers. Demographic variables were included as covariates.ResultsBoth path models demonstrated a satisfying model fit. In both models, metabolic control was associated with adherence, age, and T1DM duration. In the adolescent model, metabolic control was also related to treatment modality, single-parent household, caregiver non-support, and anxiety, whereas in the caregiver model metabolic control was associated with family conflict and caregiver support. In both models, adherence was related to age, duration, treatment modality, family conflict, caregiver support, family functioning, and emotional difficulties of the adolescent. In the adolescent model, adherence was also related to adolescent self-efficacy, whereas in the caregiver model adherence was associated with adolescent gender and caregiver non-support and support. Adolescent self-efficacy, emotional well-being, and difficulties related to adolescent/caregiver interaction appeared to be particularly important, as indicated by their stronger association with adherence and/or metabolic control.ConclusionThe results highlight the value of applying a multi-informant approach to address the psychosocial well-being of adolescents with diabetes in a large national sample. Self-efficacy, emotional, and family-related difficulties are important aspects to address in both clinical care and future research regarding adolescents with T1DM.

Project description:BackgroundWith the increasing integration of technology into society, it is advisable that researchers explore the effects of repeated digital media exposure on our most vulnerable population-infants. Excessive screen time during infancy has been linked to delays in language, literacy, and self-regulation.ObjectiveThis study explores the awareness of and adherence to the American Academy of Pediatrics' (AAP) recommendations related to avoiding screen time for infants younger than 2 years and the motivational factors associated with screen time exposure.MethodsA mixed methods survey design was used to gather responses from 178 mothers of infants younger than 2 years. The measures included infant screen time use and duration, maternal awareness of screen time use recommendations, and motivations related to screen time exposure. A variety of statistical procedures were used to explore associations between caregiver awareness of and adherence to AAP guidelines for screen time exposure, motivations related to screen time for infants, and the duration of infant screen time exposure.ResultsThe results indicated that 62.2% (111/178) of mothers were aware of the AAP screen time recommendations, but only 46.1% (82/178) could cite them accurately, and most mothers learned of them via the internet or from a medical professional. Mothers who were aware of the guidelines allowed significantly less screen time for infants than those who were unaware (P=.03). In addition, parents who adhered to the AAP guidelines reported significantly less infant screen time per day than those who did not adhere (P<.001). Among mothers who reported not adhering to the guidelines, the greatest motivation for allowing screen time was perceived educational benefits. Less educated mothers rated an infant's relaxation as a motivational factor in allowing screen time significantly higher than more highly educated mothers (P=.048). The regression analysis indicated that none of the parental motivation factors predicted daily infant screen time.ConclusionsThese results indicate 2 key approaches to improving adherence to screen time recommendations. First, the awareness of the AAP recommendations needs to be increased, which tends to improve adherence. Second, the myth that screen time can be educational for infants needs to be dispelled.

Project description:BackgroundYoung adults with asthma often report low adherence to inhaled corticosteroids (ICS), leading to uncontrolled symptoms and poor disease outcomes. Technology-enabled digital supports such as mobile health (mHealth) asthma smartphone apps have the potential to support adherence to ICS and asthma self-management. There is a need for feasibility studies to determine the usability, acceptability, and feasibility of these interventions. In addition, it is essential to determine the feasibility of recruiting and retaining young adults to plan future efficacy and effectiveness trials and therefore, establish evidence-based asthma apps.ObjectiveThis study aimed to determine (1) the feasibility of recruiting and retaining young adults to a trial and (2) the usability, acceptability, and feasibility of using the AsthmaMD app to support adherence to ICS in a population of young adults living with asthma.MethodsA multi-methods feasibility study was conducted. Young adults aged 18-30 years with asthma and current prescription for ICS were eligible and invited to take part through a university circular email, social media, and general practice sites. Participation involved completing a baseline self-report questionnaire, downloading and using the AsthmaMD app for 2 weeks, and completing the follow-up assessment, including self-report and open-ended questions about participants' experience of using the app. Primary outcomes included participant recruitment and retention and the usability, acceptability, and feasibility of using AsthmaMD. Quantitative self-report data were analyzed using descriptive statistics, and qualitative open-ended data were analyzed using inductive reflexive thematic analysis.ResultsA total of 122 young adults (females, n=101, 82.8%) with a mean age of 24.4 (SD 3.8) years were recruited and they completed baseline measures. Of the 122 young adults, 59 (48.4%) completed the study. The AsthmaMD app received a mean score of 63.1/100 (SD 20.1) on the System Usability Scale (ie, a standardized measure of usability for technology-based apps), and an overall user satisfaction score of 5.8/10 (SD 2.2). Of the 59 participants who completed the study, 49 (83%) participants used the app ≥1 day per week. Two main themes were identified in the qualitative analysis of user experiences: (1) learning how to use the app to suit the individual and (2) benefits and relevance of using the app.ConclusionsThe findings from this study indicate that it is feasible to recruit and retain young adults to examine efficacy and effectiveness in a future trial and that young adults living with asthma may find AsthmaMD to be usable, acceptable, and feasible to support adherence to ICS. Our findings also identified opportunities to further optimize the usability of AsthmaMD and similar apps. Based on our findings, we recommend providing more accessible information on how to use the app and replacing medical terminology with simplified language within the app to improve usability.Trial registrationISRCTN Registry ISRCTN11295269; https://www.isrctn.com/ISRCTN11295269.

Project description:Optimal adherence (>95%) to antiretroviral treatment (ART) remains a challenge among children and adolescents living with HIV (CALHIV). Digital adherence tools (DAT) with reminder cues have proven feasible among adult people living with HIV (PLHIV), with some concerns about the risk of HIV status disclosure. We aimed to assess the needs, contents and acceptability of an SMS-based DAT among CALHIV. We first conducted a survey to understand potential barriers to using DAT among CALHIV, then tested the DAT intervention among purposively selected participants. The DAT intervention included using the Wisepill device, receiving daily reminder SMS and receiving adherence reports on how they had taken medication in the past month. The content of the reminder SMS differed over time from asking if the medication was taken to a more neutral SMS like "take care". Afterwards, we conducted exit interviews, in-depth interviews, and focus-group discussions. We analysed quantitative findings descriptively and used thematic content analysis for qualitative data. We included 142 children and 142 adolescents in the survey, and 20 of each used the intervention. Eighty-five percent (121/142) of surveyed participants indicated they would like to receive reminder SMS. Most of them (97/121-80%) of children and 94/121(78%) of adolescents would prefer to receive daily reminders. Participants who used the DAT mentioned to be happy to use the device. Ninety percent of them had good experience with receiving reminders and agreed that the SMS made them take medication. However, 25% experienced network problems. Participants preferred neutral reminder SMSs that did not mention the word 'medication', but preserved confidentiality. The provided adherence reports inspired participants to improve their adherence. None of the participants experienced unwanted disclosure or stigmatisation due to DAT. However, 5% of adolescents were concerned about being monitored daily. This study showed that DAT is acceptable and provided insight of the needed SMS content for a customized DAT for CALHIV.

Project description:BackgroundLung-protective ventilation (LPV) improves outcomes for patients with acute respiratory distress syndrome (ARDS) through the administration of low tidal volumes (≤ 6.5 ml/kg predicted body weight [PBW]) with co-titration of positive end-expiratory pressure and fraction of inspired oxygen. Many patients with ARDS, however, are not managed with LPV. The purpose of this study was to understand the implementation barriers and facilitators to the use of LPV and a computerized LPV clinical decision support (CDS) tool in intensive care units (ICUs) in preparation for a pilot hybrid implementation-effectiveness clinical trial.MethodsWe performed an explanatory sequential mixed methods study from June 2018 to March 2019 to evaluate the variation in LPV adherence across 17 ICUs in an integrated healthcare system with > 4000 mechanically ventilated patients annually. We analyzed 47 key informant interviews of ICU physicians, respiratory therapists (RTs), and nurses in 3 of the ICUs using a qualitative content analysis paradigm to investigate site variation as defined by adherence level (low, medium, high) and to identify barriers and facilitators to LPV and LPV CDS tool use.ResultsForty-two percent of patients had an initial set tidal volume of ≤ 6.5 ml/kg PBW during the measurement period (site range 21-80%). LPV CDS tool use was 28% (site range 6-91%). This study's main findings revealed multi-factorial facilitators and barriers to use that varied by ICU site adherence level. The primary facilitator was that LPV and the LPV CDS tool could be used on all mechanically ventilated patients. Barriers included a persistent gap between clinician attitudes regarding the use of LPV and actual use, the perceived loss of autonomy associated with using a computerized protocol, the nature of physician-RT interaction in ventilation management, and the lack of clear organization measures of success.ConclusionsVariation in adherence to LPV persists in ICUs within a healthcare delivery system that was an early adopter of LPV. Potentially promising strategies to increase adherence to LPV and the LPV CDS tool for ARDS patients include initiating low tidal ventilation on all mechanically ventilated patients, establishing and measuring adherence measures, and focused education addressing the physician-RT interaction. These strategies represent a blueprint for a future hybrid implementation-effectiveness trial.

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Adherence to Multiple Treatment Recommendations in Adolescents and Young Adults with Cancer: A Mixed Methods, Multi-Informant Investigation.

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