Pre-operative hand therapy management of Dupuytren's disease: A systematic review.

Introduction: Dupuytren's Disease is a fibroproliferative disorder of the hand, with a heterogenous pathogenesis, ranging from early-stage nodule development to late-stage digital contractures. Hand therapy intervention is not routinely provided pre-operatively. The objective of this systematic review was to explore the efficacy of hand therapy interventions provided for pre-operative Dupuytren's Disease. Methods: A systematic review was undertaken of the databases CENTRAL, CINAHL, OVID Medline and OVID EMBASE, PubMed, BNI, Web of Science, with grey literature and reference searches conducted from database inception to April 2022, and confirmed in August 2023. Included studies required non-surgical intervention and outcome data on individuals with Dupuytren's Disease who have not had surgical intervention. Two reviewers conducted the searches, independently assessed eligibility and completed methodological quality assessments. Data were summarised narratively. Results: Seventeen studies were selected for final inclusion. Interventions included Extracorporeal Shockwave Therapy (ESWT), Corticosteroid Injection (CSI), Splinting, Massage and Stretching, Ultrasound Therapy (US), Temperature Controlled High Energy Adjustable Laser (THEAL). ESWT positively maintained or improved pain, active range of motion (AROM), Disabilities of the Arm Shoulder, and Hand (DASH) scores, and grip strength. US positively maintained or improved ROM and grip. Splinting positively maintained or improved ROM, CSI positively improved nodule size. Cross Frictional Massage positively impacted AROM and THEAL improved pain and DASH scores. Conclusions: Outcomes from therapeutic interventions for pre-operative management of Dupuytren's Disease were largely positive. However, there is a need for further high-quality research into these interventions to understand their full potential for the management of Dupuytren's Disease.

Effectiveness of interventions to enhance shared decision-making in wound care: A systematic review.

AIMS: To explore the effectiveness of interventions to enhance patient participation in shared decision-making in wound care and tissue viability. BACKGROUND: Caring for people living with a wound is complex due to interaction between wound healing, symptoms, psychological wellbeing and treatment effectiveness. To respond to this complexity, there has been recent emphasis on the importance of delivering patient centred wound care and shared decision-making to personalise health care. However, little is known about the effectiveness of existing interventions to support shared decision-making in wound care. DESIGN: Systematic review of interventional studies to enhance shared decision-making in wound care or tissue viability. This was reported following the Preferred Reporting Items for Systematic Reviews and Meta-Analysis (PRISMA) guidelines 2020. METHODS: Interventional primary research studies published in English up to January 2023 were included. Screening, data extraction and quality appraisal were undertaken independently by two authors. DATA SOURCES: Medline, EMBASE, Cochrane Central Register of Controlled Trails (trials database), CINAHL, British Nursing Index (BNI), WorldCat (thesis database), Scopus and registries of ongoing studies (ISRCTN registry and clinicaltrials.gov). RESULTS: 1063 abstracts were screened, and eight full-text studies included. Findings indicate, interventions to support shared decision-making are positively received. Goal or need setting components may assist knowledge transfer between patient and clinician, and could lower short term decisional conflict. However, generally findings within this study had very low certainty due to the inconsistencies in outcomes reported, and the variation and complexity of single and multiple interventions used. CONCLUSIONS: Future research on shared decision-making interventions in wound care should include the involvement of stakeholders and programme theory to underpin the interventions developed to consider the complexity of interventions. IMPLICATIONS FOR THE PROFESSION AND PATIENT CARE: Patients setting out their needs or goals and exploring patient questions are important and should be considered in clinical care. REGISTRATION: The review protocol was prospectively registered (PROSPERO database: CRD42023389820). NO PATIENT OR PUBLIC CONTRIBUTION: Not applicable as this is a systematic review.

Translating patient needs into medical device development: co-design of a photoprotection visor for Xeroderma Pigmentosum using qualitative interviews.

INTRODUCTION: People with Xeroderma Pigmentosum (XP) have a heightened sensitivity to ultraviolet radiation (UVR) and are advised to wear photoprotective clothing including a visor covering the face and neck. Photoprotective visors are homemade and predominately worn by children with decreasing frequency as age increases. To improve upon the current design and efficacy we were tasked with developing a prototype visor to meet patients' needs. METHODS: Adopting a codesign methodology, patients' experiences of wearing a visor and patient and carer views of emerging prototypes were explored during interviews. A thematic analysis was conducted in parallel with data collection and themes were interpreted into design cues; desirable attributes of a visor that would counteract the negative user experiences and meet the requirements described by patients and carers. The design cues guided the iterative development of prototypes by academic engineers. RESULTS: Twenty-four interviews were conducted with patients and carers. Thematic analysis resulted in the following five themes: Being safe from UVR exposure; self-consciousness; temperature effects; acoustic difficulties; and material properties. The following design cues were developed from the themes respectively; materials and design with high UVR protection; ability to customise with own headwear; ventilation to reduce steaming up; acoustic functionality to enable hearing and speech; foldable, portable, and easy to put on and take off. CONCLUSIONS: It is important to understand people's experiences of using medical devices to improve their safety, efficiency and user satisfaction. The user experience themes and design cues, informed the iterative development of low fidelity visor prototypes as part of a codesign process. These design cues and responses to the prototypes are guiding commercial manufacturing and regulatory approval. The visor can then be prescribed to patients, providing an equitable service of care.

Defining palliative wound care: A scoping review by European Association for Palliative Care wound care taskforce.

BACKGROUND: Deciding whether to transition to wound palliation is challenging for health care professionals because there is no agreed definition or understanding of palliative wound care, including the goals, core elements and differences from general wound management. OBJECTIVES: To conduct a scoping review with qualitative synthesis to define palliative wound care in terms of its conceptual framework, goals, principles, components, and differences from general wound management, and provide a new definition of palliative wound care based on this scoping review. ELIGIBILITY CRITERIA: Published literature that refers to the definitions, concept, goals and core elements of palliative wound care using any methodological approach, without any time limits, published in English. SOURCES OF EVIDENCE: The searches were conducted in CINAHL Complete via Ebsco, Medline via Ovid, Cochrane Library, Scopus, and Google Scholar. CHARTING METHODS: A data extraction form was developed by the review team and used independently for data charting purposes. Braun and Clarke's six phases of thematic analysis guided the qualitative synthesis. RESULTS: A total of 133 publications met the inclusion criteria. Three main themes were developed to define palliative wound care and understand its differences from general wound management: 1- Healing potential of wounds and patient vulnerability, 2- Understanding the impact on individuals and family to address needs, 3- Towards new goals and perspectives in approach to care. CONCLUSIONS: Palliative wound care focuses on symptom management, comfort, and dignity, but does not always target the healing of the wound, which is the goal of general wound care. The needs of the individual and their family must be addressed by clinicians through the provision of care and support that takes into account the true meaning of living and dying with a palliative wound. PROTOCOL REGISTRATION: A review protocol was developed but not registered.

Corrigendum to Older adult and family caregiver preferences for emergency department based-palliative care: An experience-based co-design study.

[This corrects the article DOI: 10.1016/j.ijnsa.2020.100016.].

Older adult and family caregiver preferences for emergency department based-palliative care: An experience-based co-design study.

Background: Older adults (>65 years) with palliative care needs are increasingly accessing the emergency department. Some interventions have been developed to improve the care provided, but the majority of research has focused on provider perspectives. Limited understanding of patient and family experiences and priorities means important needs may be overlooked. Objectives: To explore patient and family caregiver experiences and identify their improvement priorities for emergency department-based palliative care delivery. Design: A participatory action research design, experienced-based co-design, was adopted. Filmed and audio-recorded interviews and individual feedback sessions were used to capture patient data. Setting: An urban emergency department in the UK. Participants: Six patients aged ≥65 with palliative care needs and four family caregivers were recruited from the emergency department. Methods: Participants took part in individual or dyad audio-recorded or filmed interviews. Interview data were analyzed using thematic framework analysis. One-to-one feedback sessions with participants were used to validate findings and rank the themes to identify patient and family priorities for improvement. Results: The analysis identified five prominent themes that captured the patient and family experience of emergency department-based palliative care. 1) Systems and processes; 2) communication and information; 3) changing expectations (of what can be done for one's health on a personal and system level); 4) recommendations (for improving palliative care in the emergency department); and, 5) acknowledgement and validation (of the patient and family). All themes except 'recommendations' were selected as improvement priorities. Within the context of these improvement priorities, participants provided rich insights into their perceptions of care and identified small but significant actions that could be implemented to improve their experiences of palliative care in the emergency department. These included being offered a drink or phone call, being included in conversations about their care, and being kept informed of what was happening with their care. Conclusions: Older people with palliative care needs and their family caregivers were able to share their experiences and highlight improvement priorities for emergency department care using the experience-based co-design approach. Their experiences offer new perspectives, which can be used alongside emergency department and palliative care clinician perspectives to support service and outcome measure development in future emergency department-based palliative care. Tweetable abstract: #EBCD study shows older adults with #PalliativeCare needs value communication, compassion & inclusion in #SharedDecisionMaking in the #ED.

Participatory co-design of patient-reported outcome indicators and N-of-1 evaluation of a dressing glove for Epidermolysis bullosa.

OBJECTIVE: In autosomal recessive dystrophic Epidermolysis bullosa, repeat blistering results in finger webbing and severe contractures of the hands. The aim of this study was to codesign patient-reported outcome indicators for hand therapy with patients, carers and clinicians, and use these to proof-of-concept test a novel dressing glove for recessive dystrophic Epidermolysis bullosa, with cost analysis. METHOD: Qualitative interviews and focus groups with patients and carers generated content for the indicators. Validity and reliability were established through expert review, piloting and consensus between patients, carers and clinicians. The indicators were self-reported by patients before and while wearing the dressing glove in an N-of-1 study. Time for dressing changes and use of conventional products were also self-reported. RESULTS: A total of 11 indicators were initially generated from the thematic analysis. Expert review, piloting and consensus involved six patients, five carers and eight clinicians (total n=19). Participants agreed 14 indicators, covering hand skin condition (n=4), webbing between the digits (n=4), experiences of wearing and changing dressings (n=2), hand function (n=2), wrist function (n=1) and hand pain (n=1). In Phase 3, 12 patients scored indicators before wearing the gloves and four patients completed scoring while wearing the gloves. Statistically significant improvements between pre-glove and with-glove periods were found for most participants' experience scores. Skin appearance also improved for most participants. CONCLUSIONS: The indicators generated useful data, differentiation between scores and participants demonstrating proof-of-concept for patients with recessive dystrophic Epidermolysis bullosa who could wear the dressing gloves. The indicators are being used in routine practice, supporting clinical follow up, commercialisation and regulatory governance of the dressing glove.

Electrochemotherapy for the palliative management of cutaneous metastases: A systematic review and meta-analysis.

BACKGROUND: Electrochemotherapy combines electroporation in conjunction with chemotherapeutic agents and is used to treat tumours in many localisations, including cutaneous metastases. The symptoms associated with cutaneous malignant wounds can be distressing for patients and their management is a challenge in healthcare. AIM: The purpose of this systematic review was to investigate the effectiveness of electrochemotherapy in the context of palliative care. DESIGN: All aspects of the systematic review were followed according to the Preferred Reporting Items for Systematic Reviews and Meta-Analyses statement. DATA SOURCES: The following databases were searched for English-language reviews; Medline, Embase, CINAHL, British Nursing Index and the Cochrane Library. The search was conducted between the publication of Standard Operating Procedures in 2006 and the third week of October 2017. Studies involving oral cancers and studies with fewer than 10 patients were excluded. The selected studies were assessed for risk of bias and sub-group data were synthesised in a random-effects meta-analysis. RESULTS: From 425 studies, 29 studies were included involving 1503 patients, the pooled results were 46.6% for complete response and 82.2% for objective response according to the Response Evaluation Criteria in Solid Tumours. The meta-analysis indicated that small tumours were over twice as likely (2.25) to have a complete response than large. CONCLUSIONS: Electrochemotherapy is an effective, repeatable and minimally invasive intervention within the palliative population that can reduce symptom burden. This review is an update of previous systematic reviews by Mali et al. [1,2] and highlights the need for tailored treatment depending on each individual case.

Iterative codesign and testing of a novel dressing glove for epidermolysis bullosa.

OBJECTIVE: Recessive dystrophic epidermolysis bullosa (RDEB) is a rare genetic skin disorder which requires intensive hand therapy to delay fusion of the digits. Existing dressings do not conform to the complex structure of the hand and are applied in patches held with additional bandages, leading to an occlusive environment. The aim was to co-design with patients a dressing glove based on their user experiences and needs. METHOD: Qualitative interviews and focus groups with children and adults with RDEB, and their carers, were conducted. Iterative feedback of design cues, bench and surrogate testing of materials and prototype refinement were achieved through collaborative codesign with patients, carers, clinicians and manufacturers. RESULTS: Thematic analysis generated eight user needs and corresponding design cues, addressing issues of absorbency, adherence, comfort, adaptability, ease of application and removal, breathability, protection, and hand hygiene. A prototype was selected for proof of concept testing. CONCLUSION: This novel dressing glove design met the patient's requirements for a dressing, which conformed to the hand structure and sat in the web spaces to keep fingers separated. Proof of concept testing has since been undertaken with patients to determine performance, value for money and whether further developments are required.

Emergency department staff priorities for improving palliative care provision for older people: A qualitative study.

BACKGROUND: Emergency department-based palliative care services are increasing, but research to develop these services rarely includes input from emergency clinicians, jeopardizing the effectiveness of subsequent palliative care interventions. AIM: To collaboratively identify with emergency clinicians' improvement priorities for emergency department-based palliative care for older people. DESIGN: This was one component of an experience-based co-design project, conducted using semi-structured interviews and feedback sessions. SETTING/PARTICIPANTS: In-depth interviews with 15 emergency clinicians (nurses and doctors) at a large teaching hospital emergency department in the United Kingdom exploring experiences of palliative care delivery for older people. A thematic analysis identified core challenges that were presented to 64 clinicians over five feedback sessions, validating interview findings, and identifying shared priorities for improving palliative care delivery. RESULTS: Eight challenges emerged: patient age; access to information; communication with patients, family members, and clinicians; understanding of palliative care; role uncertainty; complex systems and processes; time constraints; and limited training and education. Through feedback sessions, clinicians selected four challenges as improvement priorities: time constraints; communication and information; systems and processes; and understanding of palliative care. As resulting improvement plans evolved, "training and education" replaced "time constraints" as a priority. CONCLUSION: Clinician priorities for improving emergency department-based palliative care were identified through collaborative, iterative processes. Though generally aware of older palliative patients' needs, clinicians struggled to provide high-quality care due to a range of complex factors. Further research should identify whether priorities are shared across other emergency departments, and develop, implement, and evaluate strategies developed by clinicians.

Using Experience-based Co-design with older patients, their families and staff to improve palliative care experiences in the Emergency Department: A reflective critique on the process and outcomes.

BACKGROUND: Increasing use of emergency departments among older patients with palliative needs has led to the development of several service-level interventions intended to improve care quality. There is little evidence of patient and family involvement in developmental processes, and little is known about the experiences of - and preferences for - palliative care delivery in this setting. Participatory action research seeking to enable collaborative working between patients and staff should enhance the impact of local quality improvement work but has not been widely implemented in such a complex setting. OBJECTIVES: To critique the feasibility of this methodology as a quality improvement intervention in complex healthcare settings, laying a foundation for future work. SETTING: an Emergency Department in a large teaching hospital in the United Kingdom. METHODS: Experience-based Co-design incorporating: 150h of nonparticipant observation; semi-structured interviews with 15 staff members about their experiences of palliative care delivery; 5 focus groups with 64 staff members to explore challenges in delivering palliative care; 10 filmed semi-structured interviews with palliative care patients or their family members; a co-design event involving staff, patients and family members. FINDINGS: the study successfully identified quality improvement priorities leading to changes in Emergency Department-palliative care processes. Further outputs were the creation of a patient-family-staff experience training DVD to encourage reflective discussion and the identification and application of generic design principles for improving palliative care in the Emergency Department. There were benefits and challenges associated with using Experience-based Co-design in this setting. Benefits included the flexibility of the approach, the high levels of engagement and responsiveness of patients, families and staff, and the impact of using filmed narrative interviews to enhance the 'voice' of seldom heard patients and families. Challenges included high levels of staff turnover during the 19 month project, significant time constraints in the Emergency Department and the ability of older patients and their families to fully participate in the co-design process. CONCLUSION: Experience-based Co-design is a useful approach for encouraging collaborative working between vulnerable patients, family and staff in complex healthcare environments. The flexibility of the approach allows the specific needs of participants to be accounted for, enabling fuller engagement with those who typically may not be invited to contribute to quality improvement work. Recommendations for future studies in this and similar settings include testing the 'accelerated' form of the approach and experimenting with alternative ways of increasing involvement of patients/families in the co-design phase.

Current practice in the management of wound odour: an international survey.

AIM: To determine from a multi-disciplinary and international perspective current practice in the management of wound odour. BACKGROUND: Malodour is cited by patients and carers as one of the most distressing and socially isolating aspects of their wounds. The absence of a standardised approach to assessment and management underscores the need to collect baseline data to support guideline development. DESIGN: On-line survey. METHODS: A study specific questionnaire in English, Spanish, Italian and German was emailed to wound care organisations worldwide, palliative and oncology nursing organisations, and known contacts with a special interest in wound management, for distribution to members between December 2011 and February 2012. RESULTS: 1444 people from 36 countries responded. 12% assess odour with descriptive words being the most frequent form of assessment. Charcoal and silver based dressings were the most frequently used odour management agents, yet, only 48.4% and 23% respectively reported these as being very effective. Antimicrobial agents were cited as most effective but were not the most frequently used. 8% use aromatherapy oils direct to the wound, and 74% combine a range of dressings to try and manage odour. Odour, pain and exudate management were the greatest wound management challenges facing patients and clinicians. 46.7% of respondents encounter patients with MFW on a monthly basis and 89% agreed there is a need to develop guidelines in this area. CONCLUSION: A 'trial and error' approach to odour management exists with low overall satisfaction with current practice. There is a need for research and education on means to assess odour and odour management options.

Mechanisms can help to use patients' experiences of chronic disease in research and practice: an interpretive synthesis.

OBJECTIVE: To identify and examine mechanisms through which patients' experiences of chronic disease can be accessed, understood, and used to improve outcomes, health care costs, and quality of life for individual patients. STUDY DESIGN AND SETTING: Interpretive synthesis of the research literature on chronic disease and associated areas of clinical practice and service development. Searches of electronic databases (MEDLINE, EMBASE, and British Nursing Index), Internet searches, and snowballing techniques identified 66 relevant publications. The analysis focused on identifying mechanisms; their strengths, weaknesses, and impact. RESULTS: Ten mechanisms were identified, each with differing potential to access and reach patients; involve patients in decisions about what information is important; enable patients to share experiences/expertise and validate their knowledge; allow professionals and patients to deliberate and build understanding; support shared decision-making, continuity/partnership development, and potential to use patients' experiences. The extent to which patients' experiences led to improved outcomes, health care costs, or quality of life related to the aims of individual studies. CONCLUSION: Patients can contribute to improving the design and delivery of chronic disease health care and research if appropriate mechanisms are in place. There is a need for future research about optimal configurations of mechanisms and links between mechanisms across health care and research.

Co-producing novel wound care products for Epidermolysis bullosa; an empirical case study of the use of surrogates in the design and prototype development process.

The Woundcare for Epidermolysis bullosa (WEB) project aims to enable people with Epidermolysis bullosa (EB), their carers and clinicians to co-produce wound care products to meet their needs. EB is an inherited disorder causing extensive, painful skin blistering and wounds. It is relatively rare, with approximately 300 000 patients worldwide, but it incurs high costs (up to £50 000 per month on products alone). During the course of four workshops, adults with EB, their carers and specialist nurses gave detailed accounts of their experiences with pre-sized, pre-shaped dressings, including the need to patchwork individual dressings over large areas of broken skin. Five themes were identified from the workshop data relating to the limitations of existing products for EB wounds: dressing fit, stability, comfort, temperature and exudate. Novel designs were generated from these themes and although the intention was to develop the designs iteratively with the workshop participants, issues arose necessitating the interim use of surrogates. Our account of the design process is given, presenting the arguments for and against the use of surrogates, with suggestions for incorporating surrogate input into product development in a way that does not undermine the integrity of patient experiences or the co-production process.

Living in dressings and bandages: findings from workshops with people with Epidermolysis bullosa.

Epidermolysis bullosa (EB) is an inherited disorder causing extensive, painful skin blistering and wounds. Currently, there is no cure and the focus of care is on the clinical management of the skin and other affected body systems, together with supportive care to individuals and families. The wound care for Epidermolysis bullosa (WEB) project is a collaboration with adults with EB, carers, clinical nurse specialists, a designer and manufacturers to develop novel products for EB wound care. This article reports the findings from workshops with adults with EB, their carers and clinical nurse specialists, together with observations of dressing changes. A cluster of significant limitations were revealed in the performance of wound care products, designed to cover a single wound, when they are used to cover extensive and whole body wounds. A working hypothesis for EB wound care was developed from the findings, together with design concepts and new products for EB wound care. In addition, a model of user engagement in medical device development and evaluation has been tested.

Malignant wound management in advanced illness: new insights.

PURPOSE OF REVIEW: This article describes why this review is timely and relevant. To report on the recent research, which advances our understanding and practice of palliative wound care (wound-related pain and symptom management or wound palliation). RECENT FINDINGS: This article describes the main themes in the literature covered by the article. The main themes include the problem of malodour and the palliative management of cutaneous and subcutaneous malignancy of skin and nonskin origins. The findings from an international survey of measures to combat wound malodour are reported, which indicate that malodour is one of the most distressing and difficult to manage symptoms associated with malignant wounds. A relatively novel palliative treatment for cutaneous malignancy, electrochemotherapy, is outlined, together with the growing evidence supporting its use. SUMMARY: This article describes the implications of the findings for clinical practice or research. The findings of the wound malodour survey indicate that approaches to managing malodour are wide ranging, but ineffective. Collaborate research and development is needed with industry into interventions to combat malodour, which are based on the causal agents. The growing evidence of the effectiveness of electrochemotherapy, as an uncomplicated palliative treatment and method of managing symptoms, offers palliative care clinicians a means of managing the otherwise relentless progression of cutaneous malignancy.

Issues and challenges of involving users in medical device development.

BACKGROUND: User engagement has become a central tenet of health-care policy. This paper reports on a case study in progress that highlights user engagement in the research process in relation to medical device development. OBJECTIVES: To work with a specific group of medical device users to uncover unmet needs, translating these into design concepts, novel technologies and products. To validate a knowledge transfer model that may be replicated for a range of medical device applications and user groups. METHODS: In depth qualitative case study to elicit and analyse user needs. The focus is on identifying design concepts for medical device applications from unmet needs, and validating these in an iterative feedback loop to the users. RESULTS: The case study has highlighted three interrelated challenges: ensuring unmet needs drive new design concepts and technology development; managing user expectations and managing the research process. CONCLUSION: Despite the challenges, active participation of users is crucial to developing usable and clinically effective devices.

Disconnection: the user voice within the wound dressing supply chain.

AIM: This study examined the user voice in England's National Health Service (NHS) wound dressing supply chain. BACKGROUND: The impetus for this work came from involvement in a collaboration between industry and clinicians, entitled Woundcare Research for Appropriate Products. Experiences from that study highlighted the notable absence of research about the impact of the supply chain on the users of dressings. METHOD: Interview data are presented following an outline of the grounded theory method used. These data were obtained from key stakeholders (n = 41) within the wound dressing supply chain such as nurses, manufacturers, distributors, professional organizations, government organizations and user groups. RESULTS: The consequences of supply disconnection revealed haphazard supply, unmet user needs and lack of information transfer between player groups. CONCLUSIONS AND IMPLICATIONS FOR NURSING MANAGEMENT: These consequences explain the lack of user voice in the supply chain and have far-reaching implications for nursing management, through purchasing decisions and nurses' management of wound care.