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1. ‘A good decision is the one that feels right for me’: Codesign with patients to inform theoretical underpinning of a decision aid website

Author

Kelly Kohut, Kate Morton, Karen Hurley, Lesley Turner, The CanGene‐CanVar Patient Reference Panel, Caroline Dale, Susan Eastbrook, Rochelle Gold, Kate Henwood, Sonia Patton, Reshma Punjabi, Helen White, Charlene Young, Julie Young, Elizabeth Bancroft, Lily Barnett, Sarah Cable, Gaya Connolly, Beth Coad, Andrea Forman, Helen Hanson, Grace Kavanaugh, Katherine Sahan, Katie Snape, Bethany Torr, Rosalind Way, Elizabeth Winchester, Alice Youngs, The International Lynch Decision Aid Stakeholder Panel, Diana Eccles, and Claire Foster

Subjects
codesign, coproduction, patient decision aid, shared decision‐making, Medicine (General), R5-920, Public aspects of medicine, RA1-1270
Abstract

Abstract Introduction Patient decision aids (PtDA) complement shared decision‐making with healthcare professionals and improve decision quality. However, PtDA often lack theoretical underpinning. We are codesigning a PtDA to help people with increased genetic cancer risks manage choices. The aim of an innovative workshop described here was to engage with the people who will use the PtDA regarding the theoretical underpinning and logic model outlining our hypothesis of how the PtDA would lead to more informed decision‐making. Methods Short presentations about psychological and behavioural theories by an expert were interspersed with facilitated, small‐group discussions led by patients. Patients were asked what is important to them when they make health decisions, what theoretical constructs are most meaningful and how this should be applied to codesign of a PtDA. An artist created a visual summary. Notes from patient discussions and the artwork were analysed using reflexive thematic analysis. Results The overarching theme was: It's personal. Contextual factors important for decision‐making were varied and changed over time. There was no one ‘best fit’ theory to target support needs in a PtDA, suggesting an inductive, flexible framework approach to programme theory would be most effective. The PtDA logic model was revised based on patient feedback. Conclusion Meaningful codesign of PtDA including discussions about the theoretical mechanisms through which they support decision‐making has the potential to lead to improved patient care through understanding the intricately personal nature of health decisions, and tailoring content and format for holistic care. Patient Contribution Patients with lived experience were involved in codesign and coproduction of this workshop and analysis as partners and coauthors. Patient discussions were the primary data source. Facilitators provided a semi‐structured guide, but they did not influence the patient discussions or provide clinical advice. The premise of this workshop was to prioritise the importance of patient lived experience: to listen, learn, then reflect together to understand and propose ideas to improve patient care through codesign of a PtDA.

Published
2024
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2. The Lived Experience of Caregiving and Perception of Service Provision among Family-Caregivers of People with Late-Stage Parkinson’s: A Qualitative Study

Author

Joy Read, Sarah Cable, Gergely Bartl, Charlotte Löfqvist, Susanne Iwarsson, and Anette Schrag

Subjects
Neurology. Diseases of the nervous system, RC346-429
Abstract

Background. The complex nature of late-stage Parkinson’s requires multiagency support and leads to an increased burden on family members who assume a multiplicity of responsibilities. The aim of this study is to further understand the lived experiences of family-caregivers and their perception of, and satisfaction with, service provision. Methods. This qualitative substudy was a part of the European multicentre Care of Late-Stage Parkinsonism (CLaSP) project. Purposive sampling resulted in a sample of eleven family-caregivers of people with late-stage Parkinson’s, who were interviewed using semistructured open-ended questions. Thematic analysis followed. Findings. Three overarching themes were developed from the data: ensuring continuous support is vital to providing care at home, perceiving unmet service provision needs, and advocating and co-ordinating all aspects of care take their toll. These themes include not only experience of services that caregivers find supportive in order to deliver care but also of disjointed care between multiple agencies, a perceived lack of Parkinson’s expertise, and there was a lack of anticipatory future planning. The constancy and scope of the family-caregiver role is described, including the need to project manage multiple aspects of care with multiple agencies, to be an advocate, and to assume new roles such as managing finances. Multiple losses were reported, which in part was mitigated by gaining expertise through information and support from professionals and organised and informal support. Conclusion. The intricacies and consequences of the family-caregivers’ role and their experience of service provision indicate the need to acknowledge and consider their role and needs, fully involve them in consultations and provide information and joined-up support to improve their well-being, and ensure their continuous significant contribution to the ongoing care of the person with Parkinson’s.

Published
2023
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3. Rehabilitation versus surgical reconstruction for non-acute anterior cruciate ligament injury (ACL SNNAP): a pragmatic randomised controlled trial

Author

David J Beard, Loretta Davies, Jonathan A Cook, Jamie Stokes, Jose Leal, Heidi Fletcher, Simon Abram, Katie Chegwin, Akiko Greshon, William Jackson, Nicholas Bottomley, Matt Dodd, Henry Bourke, Beverly A Shirkey, Arsenio Paez, Sarah E Lamb, Karen Barker, Michael Phillips, Mark Brown, Vanessa Lythe, Burhan Mirza, Andrew Carr, Paul Monk, Carlos Morgado Areia, Sean O'Leary, Fares Haddad, Chris Wilson, Andrew Price, Richard Emsley, George Peat, Martyn Snow, Marion Campbell, Tessa Howell, Hilary Johnson, Stephen McDonnell, Thomas Pinkney, Mark Williams, Helen Campbell, Jackie Davies, Jiyang Li, Christina Bagg, Laura Haywood, Anne Nicholson, Joanne Riches, Sean Symons, Mark Vertue, Louay Al Mouazzen, Rachel Bray, Damian Clark, James Coulthard, Tim Holland, Nick Howells, Andrew Jones, Richard Kapur, Alastair Kiszely, Harry Krishnan, Karen MacDonald-Taylor, Jon Manara, James Murray, Corina Negrut, Vishai Pai, Andrew Porteous, Sven Putnis, James Robinson, Shav Rupasinghe, Veenesh Selvaratnam, James Smith, Nick Smith, Jarrad Stevens, Clare Taylor, Anthony Theodorides, Niraj Vetharajan, Helen Vint, Lucy Young, Susan Bullock, Rebecca Cook, Alexander Dodds, Amanda Freeman-Hicks, Paula Hillout, Thomas Cornell, Abbie Coutts, Suzy Dean, Nicki Devooght-Johnson, Emma Ferrell, Eve Fletcher, Chrissie Hall, Benjamin Kent, Sandra Kessly, Robin Kincaid, Mohamed Lazizi, Ahmed Mostafa, Toby Nisbett, Tim Powell, Peter Riddlestone, Andrew Roberton, Jessica Summers, Lucy Whitbread, Belinda Wroath, Emma Fenlon, Andrew Hall, Helen Jeffrey, Raghuram Thonse, Debra Dunne, Andy Metcalfe, Kerri McGowan, Simon Middleton, Feisal Shah, Tim Spalding, Charlie Marie Suddens, Tamar Sweed, Joanna Teuke, Peter Thompson, David Wright, Justine Amero, Emma Brown, Hugh Chissell, Andrea Croucher, Gareth Dickinson, Catherine Hawkes-Blackburn, Alice Peacocke, Graham Smith, Carol Snipe, Kim Dearnley, Reza Mayahi, Barry Andrews, Massimo Barcelona, Hazel Giles, Abdulkerim Gokturk, Paul Harnett, Katie Jeeves, Joyce Kadunyi, Sheena Mendoza, Ines Reichert, Marta Santamaria, Harshinder Virdee, Sanjeev Anand, Nayef Aslam-Pervez, Stephen Draycott, Faye Howarth, Irfan Jina, Niall Maher, Denise Ross, Lindsey Worstenholme, Abdul Baig, Arun Bhaskaran, Daniel Banks, Tracy Brear, Carla Christie, Laura Cowen, Jack Davis, Ross Dixey, Colin Esler, Amirah Essop-Adam, Christina Haines, Linzy Houchen-Wolloff, Husein Varachia, Richard Wood, Glaxy Gray, Jessica Nichols, Alice Panes, Susan Partridge, Lawrie Rogerson, Pankaj Sharma, David Triggs, Ian Venables, Danielle Wilcock, Sarah Buckley, Thelma Darian, Elizabeth Denis, Jo Duncan, Charlotte Hirst, James Newman, Fern Richardson, Jon Smith, Megan Adcode, Megan Cottingham, Eliza Foster, Andrew Kelly, Niamh McKay, Jane Rewbury, Alison Whitcher, James Williams, Esther Zebracki, Llinos Davies, Jayadeep Jayachandran, Alison Tardivel, Victoria Whitehead, Martha Batting, Amy Bond, Marc Deakin, Christopher Dodd, Alison Hudak, Samantha Hynes, Luke Jones, Gail Lang, David McKenna, Susan Morris, Clare Scott-Dempster, Adam Sykes, Iason Vichos, Simon Wood, Rupert Clifton, Stephanie Diaz, Craig Hendy, Nishil Modi, Brendan O'Mahony, Susan O'Sullivan, Nicola Parker, Mira Pecheva, Rowan Rumonovic, Emma McLoughlin, Jeremy Rushbrook, Anna Thornhill, Valerie Parkinson, Rafael Sales, Katja Van De Snepscheut-Jones, David Wilcock, Daniel Wright, Joanna Allison, Simon Baker, Kate Beesley, Gill Ferrari, Benedict Lankester, Alison Lewis, Joanne Lyons, Jamie O'Callaghan, Sarah Sutcliffe, Dianne Wood, Emily Bannister, Chloe Brown, Debbie Burden, Terence Campbell, Emma Craig, Rashmi Easow, Julie Foxton, Alexandra Hazlerigg, Chethan Jayabev, Rosie Murdoch, Georgie Parsons, Harry Brown, Paula Carvelli, Rugaia Montaser, Ali Pepper, Sinduja Sivarajan, Oliver Templeton-Ward, Eva Wilson, Julie Cronin, Sarah Diment, Victoria King, Katharine Shean, Leonidas Vachtsevanos, Katharine Wilcocks, Ben Wilson, Paul McNestry, Joanna Ollerenshaw, James Stoddard, Paul Sutton, Sanjay Anand, Judith Bell, Albert Chikate, Diane Daniel, Timothy Davies, Tom Finnigan, Antonio Frasquet-Garcia, Susan Hopkins, Sharon Kerrison, Angela McGowan, David Sands Johnson, Lara Smith, Philip Turner, Helen Wilkinson, Lynne Allsop, Deborah Anthony, Rebecca Boulton, Sarah Brown, Vikram Desai, Mandy Gill, Cheryl Heeley, Sushrut Kulkarni, Wayne Lovegrove, Dominic Nash, Terri Ann Sewell, Sarah Shelton, Katie Slack, James Cartwright, Lynda Connor, Andrew Davies, Caroline Davies, Glyn Gainard, Dave Graham-Woollard, Carl Murphy, Leanne Quinn, Caradog Thomas, Jenny Travers, Marie Williams, Amanda Bell, Sunny Deo, Katharine Francis, Tracy Jackson, Laura McCafferty, Basalingappa Navadgi, Karan Plank, Venkat Satish, Claire Thelwall, Rachel Knight, Rahul Patel, Bruce Paton, Ashutosh Acharya, Utuman Aland, Miltiades Areirobulos, Pascal de Feyter, Lisa Ditchfield, Hafiz Iqbaz, Daniel Massey, Gareth Stables, Sarah Appleby, Michael Brown, Sarah Cable, Alexander Damen, Joana Da Rocha, Louise Foster, Elizabeth Hamilton, Catriona Hatton, Cassie Honeywell, Kunal Kulkarni, Lucy Markham, Haadiya Mohammed, John O'Grady, Yogesh Joshi, Heather Mclintock, Tania Morgan, Jane Stockport, Pranshu Agrawal, Jo Armstrong, Shannon Briggs, Ben Coupe, Anne Evans, Rob Gilbert, Sandra Latham, and Aslam Mohammed

Subjects
RD32, Treatment Outcome, Anterior Cruciate Ligament Reconstruction, Knee Joint, Anterior Cruciate Ligament Injuries, RM930, Humans, Knee Injuries, General Medicine, R1, RD, State Medicine
Abstract

Background: Anterior cruciate ligament (ACL) rupture is a common debilitating injury that can cause instability of the knee. We aimed to investigate the best management strategy between reconstructive surgery and non-surgical treatment for patients with a non-acute ACL injury and persistent symptoms of instability. Methods: We did a pragmatic, multicentre, superiority, randomised controlled trial in 29 secondary care National Health Service orthopaedic units in the UK. Patients with symptomatic knee problems (instability) consistent with an ACL injury were eligible. We excluded patients with meniscal pathology with characteristics that indicate immediate surgery. Patients were randomly assigned (1:1) by computer to either surgery (reconstruction) or rehabilitation (physiotherapy but with subsequent reconstruction permitted if instability persisted after treatment), stratified by site and baseline Knee Injury and Osteoarthritis Outcome Score—4 domain version (KOOS4). This management design represented normal practice. The primary outcome was KOOS4 at 18 months after randomisation. The principal analyses were intention-to-treat based, with KOOS4 results analysed using linear regression. This trial is registered with ISRCTN, ISRCTN10110685, and ClinicalTrials.gov, NCT02980367. Findings: Between Feb 1, 2017, and April 12, 2020, we recruited 316 patients. 156 (49%) participants were randomly assigned to the surgical reconstruction group and 160 (51%) to the rehabilitation group. Mean KOOS4 at 18 months was 73·0 (SD 18·3) in the surgical group and 64·6 (21·6) in the rehabilitation group. The adjusted mean difference was 7·9 (95% CI 2·5–13·2; p=0·0053) in favour of surgical management. 65 (41%) of 160 patients allocated to rehabilitation underwent subsequent surgery according to protocol within 18 months. 43 (28%) of 156 patients allocated to surgery did not receive their allocated treatment. We found no differences between groups in the proportion of intervention-related complications. Interpretation: Surgical reconstruction as a management strategy for patients with non-acute ACL injury with persistent symptoms of instability was clinically superior and more cost-effective in comparison with rehabilitation management. Funding: The UK National Institute for Health Research Health Technology Assessment Programme.

Published
2022

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