| Literature DB >> 36059385 |
Kirstie L Haywood1, Charlotte Southern2, Elizabeth Tutton3, Paul Swindell4, David Ellard5,6, Nathan A Pearson1, Helen Parsons5, Keith Couper5,7, Katie N Daintyi8,9, Sachin Agarwal10, Gavin D Perkins5,11.
Abstract
Background: Current measures of health-related quality of life are neither sufficiently sensitive or specific to capture the complex and heterogenous nature of the recovery and survivorship associated with cardiac arrest. To address this critical practice gap, we plan a mixed-methods study to co-produce and evaluate a new cardiac arrest-specific patient/survivor-reported outcome measure (PROM).Entities:
Keywords: Cardiac arrest recovery; Co-production; Health-related quality of life; Measurement; Outcome assessment; Patient-reported outcomes; Survivorship
Year: 2022 PMID: 36059385 PMCID: PMC9437904 DOI: 10.1016/j.resplu.2022.100288
Source DB: PubMed Journal: Resusc Plus ISSN: 2666-5204
Fig. 1Flow diagram showing the stages in the co-production of the CASHQoL.
Eligibility criteria and recruitment processes for qualitative activities in Stage 1 of PROM development.
| Eligibility Criteria | Recruitment Process | ||
|---|---|---|---|
| Participants | Inclusion criteria | Country participation | Sampling |
| Stages 1.1.2 (interviews), 1.2.1 (focus groups), and 1.3 (three-step interviews) | |||
| Adult (18 years and above) cardiac arrest survivors; cardiac arrest in previous three to 36-months | Stage 1.1 (interviews): participants from four countries (UK, USA, Canada, Australia) | Convenience sample | |
| Adult (18 years and above) key supporter | Ability to engage in activities in English. | Stage 1.2 (focus groups): participants from 11 countries (represented by IAG membership) | Advertised on patient/public-facing social media platforms |
| Ability to participate in semi-structured interviews/focus groups using on-line technology or by telephone (option for individual interviews only) | Stage 1.3: (three-step interviews): participants from 11 countries (represented by IAG membership) | Snowball sampling (supported by IAG membership) | |
| Stage 1.2.2 (focus groups) | |||
| Health professionals with experience/expertise in the post-arrest care of cardiac arrest survivors: medical, nursing, physiotherapy, occupational therapy, psychology, cardiac and neurological rehabilitation | Stage 1.2.2 (focus groups): participants from 11 countries (represented by IAG membership) | Convenience sample | |
| Advertised on healthcare professional-facing social media platforms | |||
| Snowball sampling (supported by IAG membership) | |||
Key supporter: defined as a family member/friend impacted by the cardiac arrest and/or subsequent recovery.
International Advisory Group (‘PROM Buddies’) - an international group of clinicians, methodologists and public partners who are working collaboratively towards the development of the new PROM. The group includes survivors and key supporters (9), health professionals (20) and researchers (9) with expertise in post-cardiac arrest care and/or research, with representatives from eleven countries (Australia, Canada, Denmark, Finland, Germany, Italy, the Netherlands, Singapore, Sweden, United Kingdom, USA) (detailed in Appendix A).
| Gavin Perkins (clinician) | Charly Southern (doctoral student) | Paul Swindell (survivor; Chair, Sudden Cardiac Arrest – UK (SCA-UK) | |
| Keith Couper (nurse) | Kirstie Haywood (PI) | David Jeffery (survivor) | |
| Sachin Agarwal (neurocritical care clinician) (USA) | Liz Tutton (qualitative) | Anne Brookes (survivor) | |
| Nathan Pearson (PROM development) | John Long (advocate) | ||
| Helen Parsons (psychometrics) | Barry Williams (partner; advocate) | ||
| Katie Dainty (qualitative) (Canada) | David Ellard (survivor; qualitative research) | ||
| N = 15 | 3 | 6 | 6 |
| Denmark (1) | Vicki Joshi (physical therapy) | ||
| England (4) | Tom Keeble (cardiologist) | ||
| Diane Playford (rehabilitation clinician) | |||
| Angela Hartley (cardiac rehabilitation nurse) | |||
| Marco Mion (clinical psychologist) | |||
| Finland (1) | Maaret Castren (clinician) | ||
| Germany (1) | Jan-Thorsten Graesner (clinician) | ||
| Italy (1) | Federico Semeraro (clinician) | ||
| Netherlands (2) | Veronique Moulaert (rehabilitation clinician) | ||
| Paulien Goossens (rehabilitation clinician) | |||
| Sweden (3) | Gisela Lilja (occupational therapy) | Kristofer Arestedt (psychometrics) | |
| Johnan Israelsson (nurse) | |||
| Canada (2) | Laurie Morrison (emergency medicine) | Theresa Aves (trial manager; psychometrics) | Katrysha Gellis (survivor) |
| USA (4) | Kelly Sawyer (emergency medicine) | Rob Hoadley (survivor) | |
| Clifton Callaway (emergency medicine) | Jasmine Wylie (survivor; Sudden Cardiac Arrest Survivors (Face Book)) | ||
| Australia (2) | Janet Bray (nurse) | Karen Smith (epidemiology; statistics) | |
| Singapore (1) | Marcus Ong Eng Hock (clinician) | ||
| N = 23 | 17 | 3 | 3 |
PROM Buddies: an international group of clinicians, methodologists and public partners who are working collaboratively towards the development of the new PROM.
| Name (alphabetical) | Affiliation | Country |
|---|---|---|
| Kristofer Arestedt | Faculty of Health and Life Sciences, Linnaeus University, Universitetsplatsen 1, SE-39231 | Sweden |
| Theresa Aves | Division of Cardiology, St. Michael’s Hospital, 30 Bond Street, Toronto, Ontario, M5B 1W8 | Canada |
| Janet Bray | Department of Epidemiology and Preventive Medicine, Monash University | Australia |
| Anne Brooks* | Warwick Medical School, University of Warwick, Gibbet Hill, Coventry, CV4 7AL | England |
| Clifton Callaway | University of Pittsburgh, School of Medicine, Pittsburgh, PA 15260 | USA |
| Maaret Castren | Department of Emergency Medicine and Services, Helsinki and Helsinki University, Helsinki, Finland | Finland |
| Marcus Eng Hock Ong | Singapore General Hospital, Duke-NUS Medical School | Singapore |
| Katrysha Gellis* | Living Proof CPR Training, Toronto Ontario | Canada |
| Paulien H. Goossens | Merem medische revalidatie, Soestdijkerstraatweg 129, 1213VX Hilversum, The Netherlands | The Netherlands |
| Jan-Thorsten Graesner | Institute for Emergency Medicine, University Hospital Schleswig-Holstein, Kiel, Germany | Germany |
| Angela Hartley | Clinical Exercise, 35 Rivermead, East Molesey, Surrey KT8 9AZ, United Kingdom | England |
| Rob Hoadley* | Sudden Cardiac Arrest Foundation, 7500 Brooktree Road, Wexford, PA 15090. USA | USA |
| Johan Israelsson | Department of Internal Medicine, Kalmar County Hospital, Region Kalmar County, Kalmar, Sweden | Sweden |
| David Jeffrey* | Warwick Medical School, University of Warwick, Gibbet Hill, Coventry, CV4 7AL | England |
| Vicky Joshi | REHPA, The Danish Knowledge Centre for Rehabilitation and Palliative Care, University of Southern Denmark, Vestergade 17, 5800 Nyborg | Denmark |
| Thomas R. Keeble | Essex Cardiothoracic Centre, Basildon, Essex, UK MTRC, Anglia Ruskin School of Medicine, Chelmsford, UK | England |
| Gisela Lilja | Neurology, Department of Clinical Sciences Lund, Lund University, Skane University Hospital, Lund, Sweden | Sweden |
| John Long* | Warwick Medical School, University of Warwick, Gibbet Hill, Coventry, CV4 7AL | England |
| Marco Mion | MTRC, Anglia Ruskin School of Medicine, Chelmsford, Essex, UK Essex Cardiothoracic centre, MSE Trust, Basildon, Essex, SS16 5NL | England |
| Laurie J Morrison | Emergency Medicine Division of Emergency Medicine, Department of Medicine, University of Toronto Scientist, Emergency Services, Sunnybrook Health Sciences Centre, C753, 2075 Bayview Ave. Toronto ON M4N 3M5, Canada | Canada |
| Veronique R.M. Moulaert | University of Groningen, University Medical Center Groningen, Department of Rehabilitation Medicine, Groningen, The Netherlands. PO Box 30001, 9700 RB Groningen, The Netherlands | The Netherlands |
| Diane Playford | Division of Health Sciences, Warwick Medical School, , University of Warwick, Gibbet Hill, Coventry, CV4 7AL | England |
| Kelly Sawyer | University of Pittsburgh, School of Medicine, Pittsburgh, PA 15260 | USA |
| Federico Semeraro | Department of Anaesthesia, Intensive Care and EMS, Ospedale Maggiore Carlo Alberto Pizzardi, 40133 Bologna, Italy | Italy |
| Karen Smith | Director Centre for Research and Evaluation, Ambulance Victoria, Australia Adjunct Professor Department of Epidemiology and Preventive Medicine and Department of Paramedicine, Monash University, Melbourne Australia | Australia |
| Barry Williams* | Warwick Medical School, University of Warwick, Gibbet Hill, Coventry, CV4 7AL | England |
| Jasmine Wylie* | Sudden Cardiac Arrest Survivors (Face Book) | USA |