ABSTRACT
Background: Autistic individuals might undergo a magnetic resonance imaging (MRI) examination for clinical concerns or research. Increased sensory stimulation, lack of appropriate environmental adjustments, or lack of streamlined communication in the MRI suite may pose challenges to autistic patients and render MRI scans inaccessible. This study aimed at (i) exploring the MRI scan experiences of autistic adults in the United Kingdom; (ii) identifying barriers and enablers toward successful and safe MRI examinations; (iii) assessing autistic individuals' satisfaction with MRI service; and (iv) informing future recommendations for practice improvement. Methods: We distributed an online survey to the autistic community on social media, using snowball sampling. Inclusion criteria were: being older than 16, have an autism diagnosis or self-diagnosis, self-reported capacity to consent, and having had an MRI scan in the United Kingdom. We used descriptive statistics for demographics, inferential statistics for group comparisons/correlations, and content analysis for qualitative data. Results: We received 112 responses. A total of 29.6% of the respondents reported not being sent any information before the scan. Most participants (68%) confirmed that radiographers provided detailed information on the day of the examination, but only 17.1% reported that radiographers offered some reasonable environmental adjustments. Only 23.2% of them confirmed they disclosed their autistic identity when booking MRI scanning. We found that quality of communication, physical environment, patient emotions, staff training, and confounding societal factors impacted their MRI experiences. Autistic individuals rated their overall MRI experience as neutral and reported high levels of claustrophobia (44.8%). Conclusion: This study highlighted a lack of effective communication and coordination of care, either between health care services or between patients and radiographers, and lack of reasonable adjustments as vital for more accessible and person-centered MRI scanning for autistic individuals. Enablers of successful scans included effective communication, adjusted MRI environment, scans tailored to individuals' needs/preferences, and well-trained staff.
Why is this an important issue?: Magnetic resonance imaging (MRI) is an examination that shows human anatomy and may explain the causes of symptoms. Autistic people may need MRI scans for various reasons, such as low back pain, headaches, accidents, or epilepsy. They have known sensitivities to sound, light, smell, or touch and increased anxiety, so the narrow, loud, isolating, unfamiliar MRI environment may be overwhelming to them. If MRI scans are, for these reasons, inaccessible, many autistic people will have to live with long-standing conditions, pain, or other symptoms, or have delayed treatment, with impact on their quality of life, and life expectancy. What was the purpose of this study?: We tried to understand how autistic people perceive MRI examinations, things that work, and the challenges they face. We also asked for their suggestions to improve practice and accessibility. What did we do?: We distributed an online questionnaire to autistic adults through social media. We analyzed the data using appropriate statistical and text analysis methods. What were the results of the study?: We received 112 responses. Autistic people rated their overall MRI experience as average. Nearly a third (29.6%) reported they were not sent any information before MRI, and only 17.1% reported that radiographers offered some reasonable environmental adjustments. Most participants (68%) reported that radiographers provided detailed information on the day of the scan. Only 23.2% of them disclosed their autistic identity when booking MRIs. We found that quality of communication, physical environment, patient emotions, staff training, stigma, and timely autism diagnosis impacted their MRI experiences. What do these findings add to what was already known?: Autistic people MRI scan experiences are at the heart of this project. Our project shows that MRI for common symptoms is often inaccessible by autistic people. We should improve the MRI environment, adjust communication format/content for them, and deliver person-centered care in MRI. Health care professionals should receive relevant training, to understand the challenges autistic people might face and better support them in MRI scanning. What are potential weaknesses in the study?: The pandemic has impacted participant recruitment; therefore, the results of this sample may not reflect the full impact on the wider autistic population or adequately represent the autistic community, due to small size and including only people who could consent.These results come from different centers, so there is a lot of variation in the use of MRI equipment. How will these findings help autistic adults now or in the future?: We outline the main challenges associated with MRI, so autistic adults and their families/carers understand more of what they could expect in future examinations; hopefully, researchers and scanner manufacturers will try to tackle these challenges to make MRI scans truly accessible for autistic people.We shared this knowledge with stakeholders to develop guidelines and started using it in training. We want to ensure that MRI is person-centered and more accessible for autistic patients.
ABSTRACT
This article explores coproduction in relation to autistic people. We reflect on the coproduction process with autistic adults from the Authentistic Research Collective at University College London. We aimed to support the autistic population's mental health needs by coproducing a document on adapting psychological therapy, and by developing a set of reflective guidelines to guide and encourage future coproduction initiatives between autistic and nonautistic team members. We reflect upon six elements that are of potential importance for future coproduction projects with autistic adults: (1) the meaning of coproduction; (2) ground rules and a traffic light system; (3) environmental adaptations; (4) digital communication tools; (5) encouraging authenticity; and (6) supporting autistic strengths. We conclude by discussing future research avenues into optimizing coproduction with autistic people, and how such research may influence both practice and policy. Lay summary: Why is coproduction important?: Coproduction means creating things jointly with others. Ideally, autistic people should be involved in research that is about them so that their thoughts and opinions are included. Coproduction allows this to happen.What is the purpose of this article?: There is little advice for how autistic and nonautistic people can work together to coproduce useful research. This article hopes to encourage discussion by sharing our reflections on how we used coproduction in our project.What did we do?: Our group was made up of autistic and nonautistic people. One of our goals was to gain experience in using coproduction. We created this article containing our reflections-what we found worked well, and what we felt could be done differently in the future.What did we learn?: We learnt the importance of five key areas: (1) group rules, and a "traffic light" system to help group members show how they like to communicate; (2) adapting the environment to suit people's needs; (3) inclusion of digital communication tools; (4) encouraging group members to feel they are authentic (be fully themselves); and (5) supporting autistic strengths. We hope that the discussion of these themes will be helpful for future coproduction projects.
ABSTRACT
OBJECTIVE: Multiple, short and deep inspiratory breath-holds with air of approximately 20 s are now used in radiotherapy to reduce the influence of ventilatory motion and damage to healthy tissue. There may be further clinical advantages in delivering each treatment session in only one single, prolonged breath-hold. We have previously developed techniques enabling healthy subjects to breath-hold for 7 min. Here, we demonstrate their successful application in patients with cancer. METHODS: 15 patients aged 37-74 years undergoing radiotherapy for breast cancer were trained to breath-hold safely with pre-oxygenation and mechanically induced hypocapnia under simulated radiotherapy treatment conditions. RESULTS: The mean breath-hold duration was 5.3 ± 0.2 min. At breakpoint, all patients were normocapnic and normoxic [mean end-tidal partial pressure of carbon dioxide was 36 ± 1 standard error millimetre of mercury, (mmHg) and mean oxygen saturation was 100 ± 0 standard error %]. None were distressed, nor had gasping, dizziness or disturbed breathing in the post-breath-hold period. Mean blood pressure had risen significantly from 125 ± 3 to 166 ± 4 mmHg at breakpoint (without heart rate falling), but normalized within approximately 20 s of the breakpoint. During breath-holding, the mean linear anteroposterior displacement slope of the L breast marker was <2 mm min(-1). CONCLUSION: Patients with cancer can be trained to breath-hold safely and under simulated radiotherapy treatment conditions for longer than the typical beam-on time of a single fraction. We discuss the important applications of this technique for radiotherapy. ADVANCES IN KNOWLEDGE: We demonstrate for the first time a technique enabling patients with cancer to deliver safely a single prolonged breath-hold of >5 min (10 times longer than currently used in radiotherapy practice), under simulated radiotherapy treatment conditions.
Subject(s)
Breast Neoplasms/radiotherapy , Breath Holding , Adult , Aged , Feasibility Studies , Female , Humans , Hypocapnia , Middle Aged , Radiotherapy Dosage , Radiotherapy Planning, Computer-Assisted/methods , Time FactorsABSTRACT
OBJECTIVE: Variability in the breathing pattern of patients with cancer during radiotherapy requires mitigation, including enlargement of the planned treatment field, treatment gating and breathing guidance interventions. Here, we provide the first demonstration of how easy it is to mechanically ventilate patients with breast cancer while fully conscious and without sedation, and we quantify the resulting reduction in the variability of breathing. METHODS: 15 patients were trained for mechanical ventilation. Breathing was measured and the left breast anteroposterior displacement was measured using an Osiris surface-image mapping system (Qados Ltd, Sandhurst, UK). RESULTS: Mechanical ventilation significantly reduced the within-breath variability of breathing frequency by 85% (p < 0.0001) and that of inflation volume by 29% (p < 0.006) when compared with their spontaneous breathing pattern. During mechanical ventilation, the mean amplitude of the left breast marker displacement was 5 ± 1 mm, the mean variability in its peak inflation position was 0.5 ± 0.1 mm and that in its trough inflation position was 0.4 ± 0.0 mm. Their mean drifts were not significantly different from 0 mm min(-1) (peak drift was -0.1 ± 0.2 mm min(-1) and trough drift was -0.3 ± 0.2 mm min(-1)). Patients had a normal resting mean systolic blood pressure (131 ± 5 mmHg) and mean heart rate [75 ± 2 beats per minute (bpm)] before mechanical ventilation. During mechanical ventilation, the mean blood pressure did not change significantly, mean heart rate fell by 2 bpm (p < 0.05) with pre-oxygenation and rose by only 4 bpm (p < 0.05) during pre-oxygenation with hypocapnia. No patients reported discomfort and all 15 patients were always willing to return to the laboratory on multiple occasions to continue the study. CONCLUSION: This simple technique for regularizing breathing may have important applications in radiotherapy. ADVANCES IN KNOWLEDGE: Variations in the breathing pattern introduce major problems in imaging and radiotherapy planning and delivery and are currently addressed to only a limited extent by asking patients to breathe to auditory or visual guidelines. We provide the first demonstration that a completely different technique, of using a mechanical ventilator to take over the patients' breathing for them, is easy for patients who are conscious and unsedated and reduces the within-patient variability of breathing. This technique has potential advantages in radiotherapy over currently used breathing guidance interventions because it does not require any active participation from or feedback to the patient and is therefore worthy of further clinical evaluation.
