Involving burn survivors in agenda setting on burn research: An added value?

Broerse, Jacqueline E. W.; Zweekhorst, Marjolein; Rensen, A. J. M. L. Van; Haan, Monique J.M. de

doi:10.1016/j.burns.2009.04.004

Cited by 58 publications

(47 citation statements)

References 13 publications

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“…Although this work was conducted in close collaboration with the JLA and our methods were informed by the emergent JLA approach, we were also influenced by other approaches and in particular the dialogue model, another framework for research agenda setting, which includes both consultative and deliberative methods and allows for emergent and flexible design. 170 …”

Section: Methodsmentioning

confidence: 99%

“…170 Complementary to our research into which outcomes matter to patients, carers and clinicians, and our analysis of the nature and quality of completed wounds research, we embarked on a study to determine the patient, carer and clinician research priorities in pressure ulcer prevention and treatment. We situated this work firmly within the JLA and chose pressure ulceration as the focus of this work (as opposed to leg ulcers or any other kind of complex wound) because they are the most common complex wound type (see Chapter 2) and because they are a high priority for the NHS.…”

Section: Introductionmentioning

confidence: 99%

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Wounds research for patient benefit: a 5-year programme of research

Cullum

Buckley

Dumville

et al. 2016

Programme Grants Appl Res

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BackgroundComplex wounds are those that heal by secondary intention and include lower-limb ulcers, pressure ulcers and some surgical wounds. The care of people with complex wounds is costly, with care mainly being delivered by community nurses. There is a lack of current, high-quality data regarding the numbers and types of people affected, care received and outcomes achieved.ObjectivesTo (1) assess how high-quality data about complex wounds can be captured effectively for use in both service planning and research while ensuring integration with current clinical data collection systems and minimal impact on staff time; (2) investigate whether or not a clinical register of people with complex wounds could give valid estimates of treatment effects, thus reducing dependence on large-scale randomised controlled trials (RCTs); (3) identify the most important research questions and outcomes for people with complex wounds from the perspectives of patients, carers and health-care professionals; (4) evaluate the potential contributions to decision-making of individual patient data meta-analysis and mixed treatment comparison meta-analysis; and (5) complete and update systematic reviews in topic areas of high priority.MethodsTo meet objectives 1 and 2 we conducted a prevalence survey and developed and piloted a longitudinal disease register. A consultative, deliberative method and in-depth interviews were undertaken to address objective 3. To address objectives 4 and 5 we conducted systematic reviews including mixed treatment comparison meta-analysis.ResultsFrom the prevalence survey we estimated the point prevalence of all complex wounds to be 1.47 per 1000 people (95% confidence interval 1.38 to 1.56 per 1000 people). Pressure ulcers and venous leg ulcers were the most common type of complex wound. A total of 195 people with a complex wound were recruited to a complex wounds register pilot. We established the feasibility of correctly identifying, extracting and transferring routine NHS data into the register; however, participant recruitment, data collection and tracking individual wounds in people with multiple wounds were challenging. Most patients and health professionals regarded healing of the wound as the primary treatment goal. Patients were greatly troubled by the social consequences of having a complex wound. Complex wounds are frequently a consequence of, and are themselves, a long-term condition but treatment is usually focused on healing the wound. Consultative, deliberative research agenda setting on pressure ulcer prevention and treatment with patients, carers and clinicians yielded 960 treatment uncertainties and a top 12 list of research priorities. Of 167 RCTs of complex wound treatments in a systematic review of study quality, 41% did not specify a primary outcome and the overall quality of the conduct and reporting of the research was poor. Mixed-treatment comparison meta-analysis in areas of high priority identified that matrix hydrocolloid dressings had the highest probability (70%) of being the most effective dressing for diabetic foot ulcers, whereas a hyaluronan fleece dressing had the highest probability (35%) of being the most effective dressing for venous ulcers; however, the quality of this evidence was low and uncertainty is high.ConclusionsComplex wounds are common and costly with a poor evidence base for many frequent clinical decisions. There is little routine clinical data collection in community nursing. A prospective complex wounds register has the potential to both assist clinical decision-making and provide important research evidence but would be challenging to implement without investment in information technology in NHS community services. Future work should focus on developing insights into typical wound healing trajectories, identifying factors that are prognostic for healing and assessing the cost-effectiveness of selected wound treatments.FundingThe National Institute for Health Research Programme Grants for Applied Research programme.

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Section: Methodsmentioning

confidence: 99%

Section: Introductionmentioning

confidence: 99%

Wounds research for patient benefit: a 5-year programme of research

Cullum

Buckley

Dumville

et al. 2016

Programme Grants Appl Res

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“…Due to the strict deadline set by the Minister of Health, time and resources were limited. Based on previous experiences with public and patient involvement in research agenda setting and interactive policy making, a participatory approach was developed based on the Dialogue Model [25][26][27][28]36,38,42,46,48], comprising four phases: (1) exploration, (2) consultation and prioritisation, (3) integration, and (4) follow-up.…”

Section: Methodsmentioning

confidence: 99%

“…The research agendas should be established using a participatory methodology whereby a broad consultation of lay patients had taken place. This resulted in the inclusion of six disease domains: burns [36], diabetes [37], kidney diseases [38,39], respiratory diseases [27,28,40], intellectual disabilities [41][42][43], and neuromuscular diseases [44]. The agendas were set up using the Dialogue Model, a model for patient participation in setting a research agenda, which is developed in the Netherlands.…”

Section: The Case In Briefmentioning

confidence: 99%

Patient involvement in a scientific advisory process: Setting the research agenda for medical products

Elberse¹,

Pittens²,

Buning³

et al. 2012

Health Policy

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“…Tredget reviewed these dermal conditions in 1994 [2] and in 2009 [3], making it clear that in the 15 years between reviews no real advances in prevention or treatment occurred. Scarring is a topic of interest not only to burn researchers; Broerse has reported that burn survivors also rank it among the most undesirable outcomes to be solved [4].…”

Section: Introductionmentioning

confidence: 99%

Functional Genomics Unique to Week 20 Post Wounding in the Deep Cone/Fat Dome of the Duroc/Yorkshire Porcine Model of Fibroproliferative Scarring

et al. 2011

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BackgroundHypertrophic scar was first described over 100 years ago; PubMed has more than 1,000 references on the topic. Nevertheless prevention and treatment remains poor, because 1) there has been no validated animal model; 2) human scar tissue, which is impossible to obtain in a controlled manner, has been the only source for study; 3) tissues typically have been homogenized, mixing cell populations; and 4) gene-by-gene studies are incomplete.Methodology/Principal FindingsWe have assembled a system that overcomes these barriers and permits the study of genome-wide gene expression in microanatomical locations, in shallow and deep partial-thickness wounds, and pigmented and non-pigmented skin, using the Duroc(pigmented fibroproliferative)/Yorkshire(non-pigmented non-fibroproliferative) porcine model. We used this system to obtain the differential transcriptome at 1, 2, 3, 12 and 20 weeks post wounding. It is not clear when fibroproliferation begins, but it is fully developed in humans and the Duroc breed at 20 weeks. Therefore we obtained the derivative functional genomics unique to 20 weeks post wounding. We also obtained long-term, forty-six week follow-up with the model.Conclusions/Significance1) The scars are still thick at forty-six weeks post wounding further validating the model. 2) The differential transcriptome provides new insights into the fibroproliferative process as several genes thought fundamental to fibroproliferation are absent and others differentially expressed are newly implicated. 3) The findings in the derivative functional genomics support old concepts, which further validates the model, and suggests new avenues for reductionist exploration. In the future, these findings will be searched for directed networks likely involved in cutaneous fibroproliferation. These clues may lead to a better understanding of the systems biology of cutaneous fibroproliferation, and ultimately prevention and treatment of hypertrophic scarring.

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Involving burn survivors in agenda setting on burn research: An added value?

Cited by 58 publications

References 13 publications

Wounds research for patient benefit: a 5-year programme of research

Wounds research for patient benefit: a 5-year programme of research

Patient involvement in a scientific advisory process: Setting the research agenda for medical products

Functional Genomics Unique to Week 20 Post Wounding in the Deep Cone/Fat Dome of the Duroc/Yorkshire Porcine Model of Fibroproliferative Scarring

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