scholarly journals Stigma from medication use: an under recognised burden of care

Breathe ◽  
2021 ◽  
Vol 17 (1) ◽  
pp. 210002
Author(s):  
Sonal Kansra ◽  
Rachel Calvert ◽  
Steve Jones

Children with respiratory diseases take treatments for the self-management of symptoms and to maintain disease control. Often, these treatments need to be taken in social environments like school. Respiratory treatments can foster a feeling of difference and stigmatisation, which negatively impact on the quality of life and adherence to treatment. Such perceptions can lead to a less than optimal disease control, a vicious cycle leading to further social exclusion and stigma. This aspect of “burden of treatment” is poorly recognised by clinicians. Recognition of how treatments and clinical practice can contribute to stigma, can help address this burden of care.Educational aimsTo understand the meaning of the term “stigma” within the context of respiratory health conditions and how medication or treatments can contribute to stigma in children and young people.To understand the potential impact of stigma on adherence, disease control and quality of life.To consider strategies to manage the stigma associated with health treatments across spheres of influence.

2021 ◽  
Author(s):  
Sofia Pazmino ◽  
Anikó Lovik ◽  
Annelies Boonen ◽  
Diederik De Cock ◽  
Veerle Stouten ◽  
...  

ABSTRACTObjectiveTo unravel disease impact in early RA patients by separately quantifying patient reported (PRF), clinical (CF) and laboratory (LF) factors. We put forward a new indicator, the discordance score (DS), for early identification and prediction of unmet patient outcomes in terms of future achievement of sustained remission and RA-related quality of life (QoL).MethodsWe obtained factor scores via factor analysis in the CareRA trial, then calculated the DS between PRF and the mean of the other scores. We computed the improvement from baseline to week 104 (%) and area-under-the-curve (AUC) across time-points per factor score and compared these between patients achieving or not achieving sustained (week 16 to 104) remission (DAS28CRP<2.6) with ANOVA. Logistic and linear regressions respectively were used to predict SR based on previous factor and discordance scores, and QoL at year 1 and 2 based on DS at week 16.ResultsPRF, CF and LF scores improved rapidly within 8 weeks. In patients achieving SR; PRF improved 57%, CF 90% and LF 27%, compared to 32% PRF (p=0.13), 77% CF (p<0.001) and 9% LF (p=0.36) score improvement in patients not achieving SR. Patients achieving SR had an AUC of 15.7, 3.4 and 4.8 for PRF, CF and LF respectively, compared to 33.2, 10.1, and 7.2 in participants not achieving SR (p<0.001 for all). Early factor and discordance scores were associated with later stage factor scores as well as QoL and PRF scores predicted SR (p<0.005 for PRF and DS).ConclusionsAll factor scores improved rapidly, especially in patients achieving SR. Patient-reported burden improved less extensively. Discordance scores could help in predicting the need for additional non-pharmacological interventions to achieve SR and decrease disease impact.KEY MESSAGESWhat is already known about this subject?Early and intensive RA drug-treatment using disease activity as a target allows rapid disease control and prevents joint destruction.Including pain, fatigue and physical function when assessing patients with early RA broadens the evaluation of disease impact.What does this study add?Leveraging patient reported outcomes (pain, fatigue and physical function) and traditional disease activity measures, we introduce a new indicator (named discordance score) for unraveling disease impact and treatment efficacy.We show how the discordance score stands for current unmet patient reported outcomes and could be used to predict future sustained disease contol and quality of life (1 and 2 years after baseline).We demonstrate this effect both in patients with and without sustained remissionHow might this impact on clinical practice or future developments?The earlier detection of unmet needs despite good disease control could allow to perform timely interdisciplinary interventions other than medication adaptations and could promote psychosocial wellbeing for patients.


2019 ◽  
Author(s):  
Elizabeth Yonko ◽  
Erin Carter ◽  
Robert Sandhaus ◽  
Cathleen Raggio

2020 ◽  
Author(s):  
Hiran Thabrew ◽  
Karolina Stasiak ◽  
Harshali Kumar ◽  
Tarique Naseem ◽  
Christopher Frampton ◽  
...  

BACKGROUND Approximately 10% to 12% of New Zealand children and young people have long-term physical conditions (also known as chronic illnesses) and are more likely to develop psychological problems, particularly anxiety and depression. Delayed treatment leads to worse physical and mental healthcare, school absence, and poorer long-term outcomes. Recently, electronic health (eHealth) interventions, especially those based on the principles of Cognitive Behavior Therapy (CBT), have been shown to be as good as face-to-face therapy. Biofeedback techniques have also been shown to enhance relaxation during the treatment of anxiety. However, these modalities have rarely been combined. Young people with long-term physical conditions have expressed a preference for well-designed and technologically-based support to deal with psychological issues, especially anxiety. OBJECTIVE This study aimed to co-design and evaluate the (i) acceptability and (ii) usability of a CBT and biofeedback-based, 5-module eHealth game called ‘Starship Rescue’ and (iii) to provide preliminary evidence regarding its effectiveness in addressing anxiety and quality of life in young people with long-term physical conditions. METHODS Starship Rescue was co-designed with children and young people from a tertiary hospital in Auckland, New Zealand. Following this, 24 young people aged 10 to 17 years were enrolled in an open trial, during which they were asked to use the game for an 8-week period. Acceptability of the game to all participants was assessed using a brief, open-ended questionnaire, and more detailed feedback was obtained from a subset of 10 participants via semi-structured interviews. Usability was evaluated via the System Usability Scale (SUS) and device-recorded frequency and duration of access on completion of the game. Anxiety levels were measured prior to commencement, on completion of the game, and 3 months later using the Generalized Anxiety Disorder 7-item scale (GAD-7) and Spence Child Anxiety Scales (SCAS), and at the start of each module and at the end of the game using an embedded Likert/visual analog scale. Quality of life was measured prior to commencement and on completion of the game using the Pediatric Quality of Life Scale (PEDS-QL). RESULTS Users gave Starship Rescue an overall rating of 5.9 out of 10 (range 3-10 and a mean score of 71 out of 100 (SD 11.7; min 47.5; max 90) on the System Usability Scale (SUS). The mean time period for use of the game was just over 11-weeks (78.8 days, 13.5 hours, 40 minutes). Significant reductions in anxiety were noted between the start and end of the game on the GAD-7 (-4.6 (p=0.000)), SCAS (-9.6 (p=0.005)), and the Likert/visual analogue scales (-2.4 (p=0.001)). Quality of life also improved on the PedsQL scale (+4.3 (p=0.042)). All changes were sustained at 3-month follow-up. CONCLUSIONS This study provides preliminary evidence for Starship Rescue being an acceptable, usable and effective eHealth intervention for addressing anxiety in young people with long-term physical conditions. Further evaluation is planned via a more formal randomized controlled trial. CLINICALTRIAL Australian New Zealand Clinical Trials Network Registry (ANZCTR): ACTRN12616001253493p;https://www.anzctr.org.au/Trial/Registration/TrialReview.aspx?id=371443 (Archived by WebCite at http://www.webcitation.org/6sYB716lf)


2007 ◽  
Vol 39 (9) ◽  
pp. 1474-1480 ◽  
Author(s):  
ADRIANA FANELLI ◽  
ANNA LUCIA BARROS CABRAL ◽  
JOSE ALBERTO NEDER ◽  
MILTON ARRUDA MARTINS ◽  
CELSO RICARDO FERNANDES CARVALHO

2014 ◽  
Vol 103 (8) ◽  
pp. 850-855 ◽  
Author(s):  
Katri Backman ◽  
Eija Piippo-Savolainen ◽  
Hertta Ollikainen ◽  
Heikki Koskela ◽  
Matti Korppi

Children ◽  
2021 ◽  
Vol 8 (12) ◽  
pp. 1122
Author(s):  
Sarah Achterrath ◽  
Teresa Kruse ◽  
Julia Neuschulz ◽  
Isabelle Graf ◽  
Joachim Zöller ◽  
...  

The therapy of patients with Crouzon syndrome involves a multidisciplinary team. In most cases, this therapy is extensive, time-consuming, and exhausting for the patient. This case report illustrates a temporally coordinated therapy plan that succeeds in reducing the burden of care. Showing typical extraoral characteristics of Crouzon syndrome, the patient had a frontal and left-sided crossbite, and impaction of the maxillary canines. Multidisciplinary therapy included the extraction of multiple teeth, midface distraction at Le Fort III level, and alignment of the impacted teeth. Before starting, during, and after completion of the treatment, the patient’s oral health-related quality of life was assessed using COHIP-19. The combination of different treatment steps significantly reduced the duration of therapy. The therapy improved not only the patient’s oro- and craniofacial function, but also the patient’s facial appearance in a short treatment period. The patient’s quality of life improved considerably during this time. In the treatment of severe craniofacial anomalies, the highest priority should be given to keeping the burden of care low. All measures should encourage young patients’ appropriate psychosocial development despite extensive therapies, ensuring at the same time medically satisfactory treatment results.


2018 ◽  
Vol 199 (4S) ◽  
Author(s):  
Glenn T. Werneburg ◽  
Michael Kongnyuy ◽  
Daniel M. Halpern ◽  
Jose M. Salcedo ◽  
Connie Chen ◽  
...  

2019 ◽  
Author(s):  
Mohsen Yaghoubi ◽  
Amin Adibi ◽  
Zafar Zafari ◽  
J Mark FitzGerald ◽  
Shawn D. Aaron ◽  
...  

AbstractBackgroundAsthma diagnosis in the community is often made without objective testing.ObjectiveThe aim of this study was to evaluate the cost-effectiveness of implementing a stepwise objective diagnostic verification algorithm among patients with community-diagnosed asthma in the United States (US).MethodsWe developed a probabilistic time-in-state cohort model that compared a stepwise asthma verification algorithm based on spirometry and methacholine challenge test against the current standard of care over 20 years. Model input parameters were informed from the literature and with original data analyses when required. The target population was US adults (≥15 y/o) with physician-diagnosed asthma. The final outcomes were costs (in 2018 $) and quality-adjusted life years (QALYs), discounted at 3% annually. Deterministic and probabilistic analyses were undertaken to examine the effect of alternative assumptions and uncertainty in model parameters on the results.ResultsIn a simulated cohort of 10,000 adults with diagnosed asthma, the stepwise algorithm resulted in the removal of diagnosis in 3,366. This was projected to be associated with savings of $36.26 million in direct costs and a gain of 4,049.28 QALYs over 20 years. Extrapolating these results to the US population indicated an undiscounted potential savings of $56.48 billion over 20 years. Results were robust against alternative assumptions and plausible changes in values of input parameters.ConclusionImplementation of a simple diagnostic testing algorithm to verify asthma diagnosis might result in substantial savings and improvement in patients’ quality of life.Key MessagesCompared with current standards of practice, the implementation of an asthma verification algorithm among US adults with diagnosed asthma can be associated with reduction in costs and gain in quality of life.There is substantial room for improving patient care and outcomes through promoting objective asthma diagnosis.Capsule summaryAsthma ‘overdiagnosis’ is common among US adults. An objective, stepwise verification algorithm for re-evaluation of asthma diagnosis can result in substantial savings in costs and improvements in quality of life.


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