Inspired by chance: valuing patients’ informal contributions to research

Crutch, Sebastian J.; Herron, Daniel M.; Pickett, James; Rosser, B. R. Simon; Rossor, Martin N.

doi:10.1136/bmj.m4478

Cited by 7 publications

(12 citation statements)

References 10 publications

Supporting

Mentioning

Contrasting

Order By: Relevance

“…Oculomotor assessment was normal in patients with tAD apart from the presence of square wave jerks on fixation. Oculomotor abnormalities were in line with previous investigations and consistent with core features of PCA and Balint's syndrome (oculomotor apraxia) (Mendez et al 2002;Shakespeare et al 2015;Crutch et al 2017). One healthy control was excluded owing to positional downbeat nystagmus.…”

Section: Sensory and Neuro-otological Assessmentsupporting

confidence: 84%

“…Twenty-two PCA patients, 21 tAD patients and 21 healthy controls were included in the study. PCA and tAD groups fulfilled clinical criteria for PCA-pure and research criteria for probable AD, respectively (McKhann et al 2011;Crutch et al 2017). Groups were of comparable sex and patient groups were of comparable disease severity (Table 1).…”

Section: Participantsmentioning

confidence: 99%

“…One patient group presented with typical, memory-led Alzheimer's disease (tAD), the other with posterior cortical atrophy (PCA), often considered the most common atypical AD clinical phenotype (Alladi et al 2007;Warren et al 2012;Graff-Radford et al 2021). Despite most commonly being underpinned by AD pathology, PCA is characterised by progressive decline in higher visual processing and other posterior cortical functions with relative sparing of memory, language and executive functions (Tang-Wai et al 2004;Crutch et al 2017).…”

Section: Introductionmentioning

confidence: 99%

“…While diminished visual functions are considered the most well-recognised or defining features of PCA, patient reports and formal investigations increasingly suggest non-visual perceptual disturbances (Golden et al 2015;Crutch et al 2018Crutch et al , 2020Hardy et al 2020). Reports suggestive of abnormal multisensory integration, vertical-plane disorientation and subjective balance disorder include PCA patients asking 'am I the right way up?'…”

Section: Introductionmentioning

confidence: 99%

See 3 more Smart Citations

Altered visual and haptic verticality perception in posterior cortical atrophy and Alzheimer's disease

Day

Ocal

Peters

et al. 2021

The Journal of Physiology

View full text Add to dashboard Cite

There is increasing theoretical and empirical support for the brain combining multisensory information to determine the direction of gravity and hence uprightness. A fundamental part of the process is the spatial transformation of sensory signals between reference frames: eye‐centred, head‐centred, body‐centred, etc. The question ‘Am I the right way up?’ posed by a patient with posterior cortical atrophy (PCA) suggests disturbances in upright perception, subsequently investigated in PCA and typical Alzheimer's disease (tAD) based on what looks or feels upright. Participants repeatedly aligned to vertical a rod presented either visually (visual‐vertical) or haptically (haptic‐vertical). Visual‐vertical involved orienting a projected rod presented without or with a visual orientation cue (circle, tilted square (±18°)). Haptic‐vertical involved orientating a grasped rod with eyes closed using a combination of side (left, right) and hand (unimanual, bimanual) configurations. Intraindividual uncertainty and bias defined verticality perception. Uncertainty was consistently greater in both patient groups than in control groups, and greater in PCA than tAD. Bias in the frontal plane was strongly directionally affected by visual cue tilt (visual‐vertical) and grip side (haptic‐vertical). A model was developed that assumed verticality information from multiple sources is combined in a statistically optimal way to produce observed uncertainties and biases. Model results suggest the mechanism that spatially transforms graviceptive information between body parts is disturbed in both patient groups. Despite visual dysfunction being typically considered the primary feature of PCA, disturbances were greater in PCA than tAD particularly for haptic‐vertical, and are considered in light of posterior parietal vulnerability. Key points The perception of upright requires accurate and precise estimates of orientation based on multiple noisy sensory signals. The question ‘Am I the right way up?’ posed by a patient with posterior cortical atrophy (PCA; purported ‘visual variant Alzheimer's’) suggests disturbances in the perception of upright. What looks or feels upright in PCA and typical Alzheimer's disease (tAD) was investigated by asking participants to repeatedly align to vertical a rod presented visually (visual‐vertical) or haptically (haptic‐vertical). PCA and tAD groups exhibited not only greater perceptual uncertainty than controls, but also exaggerated bias induced by tilted visual orientation cues (visual‐vertical) and grip side (haptic‐vertical). When modelled, these abnormalities, which were particularly evident in PCA haptic‐vertical performance, were compatible with disruption of a mechanism that spatially transforms verticality information between body parts. The findings suggest an important role of posterior parietal cortex in verticality perception, and have implications for understanding spatial disorientation in dementia.

show abstract

Section: Sensory and Neuro-otological Assessmentsupporting

confidence: 84%

Section: Participantsmentioning

confidence: 99%

Section: Introductionmentioning

confidence: 99%

Section: Introductionmentioning

confidence: 99%

See 2 more Smart Citations

Altered visual and haptic verticality perception in posterior cortical atrophy and Alzheimer's disease

Day

Ocal

Peters

et al. 2021

The Journal of Physiology

View full text Add to dashboard Cite

show abstract

“…Each of the UCLH BRC’s 11 scientific themes pursue theme-specific PPI activities. 29 We host a large annual Research Open Day in University College Hospital at which up to 50 research groups have displays to showcase their research for hundreds of patients and visitors to the hospital, encourage engagement with research and identify new opportunities for public involvement. We fund 50 laboratory placements with UCL biomedical scientists every year for school pupils from disadvantaged backgrounds.…”

Section: Discussionmentioning

confidence: 99%

Evaluation of a patient and public involvement training programme for researchers at a large biomedical research centre in the UK

Hanley

Denegri

et al. 2021

BMJ Open

View full text Add to dashboard Cite

ObjectivesTo design, deliver and evaluate a programme of training workshops for biomedical researchers aimed at building confidence and skills in actively involving patients and the public (PPI) in research.DesignA bespoke programme of training workshops in PPI aimed at researchers.SettingA large National Institute for Health Research Biomedical Research Centre in London and several partner organisations.Participants721 scientists, clinicians and research managers attending dedicated training in PPI at a major London NHS (National Health Service)–university partnership.InterventionsA programme of 72 training workshops, designed to build practical skills and confidence for researchers working with patients and the public in research, was delivered at a major research-active NHS:university partnership. An iterative approach was taken to the programme, with the content of the workshops continually reviewed and refreshed to respond to the needs of researchers. Surveys before, immediately following and 6 months after training investigated the impact on researchers’ confidence and skills in PPI work, and the kind of PPI they subsequently carried out.ResultsTraining brought about immediate marked increases in researchers’ self-reported confidence to carry out PPI activities within their research, and in their knowledge of good practice. The evaluation indicates that workshop attendees were more likely to involve patients in their research following training. Researchers tended to involve patients and the public in a range of areas, including input to study design and patient information, in particular.ConclusionsWhen positioned within a broader organisational strategy for PPI in research, such training has an important role to play in progressing PPI in a major research partnership. Training appeared to provide the confidence needed to carry out PPI which enabled further development of confidence and skills. Involving researchers who have attended the training in the ongoing development of the programme and bringing in patients to the training programme are key next steps.

show abstract

Diagnosis and Management of Posterior Cortical Atrophy

Yong

Graff‐Radford

Ahmed

et al. 2023

Curr Treat Options Neurol

Self Cite

View full text Add to dashboard Cite

Purpose of review The study aims to provide a summary of recent developments for diagnosing and managing posterior cortical atrophy (PCA). We present current efforts to improve PCA characterisation and recommendations regarding use of clinical, neuropsychological and biomarker methods in PCA diagnosis and management and highlight current knowledge gaps. Recent findings Recent multi-centre consensus recommendations provide PCA criteria with implications for different management strategies (e.g. targeting clinical features and/or disease). Studies emphasise the preponderance of primary or co-existing Alzheimer’s disease (AD) pathology underpinning PCA. Evidence of approaches to manage PCA symptoms is largely derived from small studies. Summary PCA diagnosis is frequently delayed, and people are likely to receive misdiagnoses of ocular or psychological conditions. Current treatment of PCA is symptomatic — pharmacological and non-pharmacological — and the use of most treatment options is based on small studies or expert opinion. Recommendations for non-pharmacological approaches include interdisciplinary management tailored to the PCA clinical profile — visual-spatial — rather than memory-led, predominantly young onset — and psychosocial implications. Whilst emerging disease-modifying treatments have not been tested in PCA, an accurate and timely diagnosis of PCA and determining underlying pathology is of increasing importance in the advent of disease-modifying therapies for AD and other albeit rare causes of PCA.

show abstract

Inspired by chance: valuing patients’ informal contributions to research

Abstract: Serendipitous contributions from patients that influence the research agenda should be better recognised and acknowledged, argue Sebastian Crutch and colleagues

Cited by 7 publications

References 10 publications

Altered visual and haptic verticality perception in posterior cortical atrophy and Alzheimer's disease

Altered visual and haptic verticality perception in posterior cortical atrophy and Alzheimer's disease

Evaluation of a patient and public involvement training programme for researchers at a large biomedical research centre in the UK

Diagnosis and Management of Posterior Cortical Atrophy

Contact Info

Product

Resources

About