An international survey to explore outcome measures in chronic oedema and lymphoedema.

There is a lack of agreement on treatment outcomes for chronic oedema and lymphoedema. The International Lymphoedema Framework (ILF) is undertaking a project to understand this. An international survey using a range of methods was developed and deployed through SurveyMonkey and social media.

An international study to explore the challenges faced by the medical device industry in the development of compression products and reimbursement.

Lack of agreement over the international classification for compression therapy contributes to confusion over what measures are required to capture patient-reported and cost-effective outcomes of compression therapy for the heterogenous patient population. The medical device industry that manufactures compression products has important insights into these iissues, which have not been previously explored. This knowledge could provide clarity for improving the development of compression products and use of outcome measures internationally, which could improve access and uptake of compression.

LIMPRINT in Italy.

To define the profile of patients presenting with chronic edema (CE) in three centers in Italy (Lymphoedema IMpact and PRevalence INTernational). Data were collected in patients referred for CE between September 2016 and July 2017. A total of 1637 were recruited, 86.

Factors Predicting Limb Volume Reduction Using Compression Bandaging Within Decongestive Lymphatic Therapy in Lymphedema: A Multicountry Prospective Study.

To identify predictive factors associated with limb volume reduction using different decongestive lymphatic therapy (DLT) systems in patients with lymphoedema, over a period of up to 28 days. A multicountry (Canada, France, Germany, the United Kingdom) prospective cohort study using (DLT): skin care, exercise, compression bandaging, and manual lymphatic drainage for up to 4 weeks. Reduction in limb volume comparing DLT with (1) standard multilayer bandaging with inelastic material, and with (2) multilayer bandaging with Coban2, together with the identification of factors associated with limb volume changes.

Development of Self-Efficacy Tools for Parents and Professionals Caring for Children and Young People with Lymphedema (ILF Parent SE and ILF Professional SE).

Self-management is a key aspect of lymphedema treatment and self-efficacy is a key factor linked to long-term adherence to treatment. The study aimed to generate self-efficacy scales to support the care of children and adolescents with lymphedema to support self-management. Parents of children with lymphedema and the professionals caring for them were recruited during a lymphedema educational camp.

"I Cry. I Simply Cry." An Ethnography of a Lymphedema Summer Camp.

The aim of this study was to explore how self-management is taught, learnt, and experienced during a 3-day educational Lymphedema Camp for parents of children with lymphedema. Participants (professionals, parents, and children) were observed during camp activities and interviewed informally and formally in focus groups. The embodied nature of the experience expressed by professionals, parents, and researchers became the analytical focus for understanding the felt tensions in the teaching and learning of self-management to families.

Quality of Life and Costs Within Decongestive Lymphatic Therapy in Patients with Leg Lymphedema: A Multicountry, Open-Label, Prospective Study.

Little is known of the impact in terms of health-related quality of life (HRQoL) and cost-effectiveness with decongestive therapy. To examine changes in limb volume, quality of life (QoL), and treatment cost of methods of decongestive lymphatic therapy (DLT). Patients with chronic edema/lymphedema of the leg were invited to participate in a study of DLT in four countries (United Kingdom, France, Germany, and Canada).

Association Between Access to Specialists and History of Cellulitis Among Patients with Lymphedema: Secondary Analysis Using the National LIMPRINT Database.

Cellulitis is frequently encountered in patients with lymphedema despite existing prevention protocols. To resolve this issue, social aspects surrounding patients, such as communication with patients and professionals, are necessary to consider new approaches. This study aimed to clarify the association between the history of cellulitis in patients with lymphedema and access to specialists after adjustment for relevant confounding factors.

Communication with patients using negative wound pressure therapy and their adherence to treatment.

Objective: The purpose of this study was to explore the challenges of communication between patients and health professionals, and patient adherence to treatment for hard-to-heal wounds when using negative wound pressure therapy (NPWT).

Methods: Face-to-face, semi-structured interviews were conducted with patients undergoing NPWT. Specific features of the NPWT device were the priority for discussion although other factors central to communication and adherence were also explored.

LIMPRINT: The UK Experience-Subjective Control of Swelling in Patients Attending Specialist Lymphedema Services.

This study was undertaken as part of the UK LIMPRINT international study to determine the number of people with chronic edema (CO) and its impact on health services. Overall 7436 with CO were recruited in the main UK study from a range of health settings. Factors relating to subjective control of arm and leg CO were defined in the UK.

LIMPRINT in Specialist Lymphedema Services in United Kingdom, France, Italy, and Turkey.

There is no standardized international model for specialist lymphedema services, which covers the types of lymphedema treated and the treatments provided. The aim of this study was to provide a profile of patients attending specialist lymphedema services in different countries to explore similarities and differences. The LIMPRINT core tool was used in specialist lymphedema services in the United Kingdom, France, Italy, and Turkey.

The Prevalence and Functional Impact of Chronic Edema and Lymphedema in Japan: LIMPRINT Study.

This was a part of LIMPRINT (Lymphoedema IMpact and PRevalence-INTernational), an international study aimed at capturing the size and impact of lymphedema and chronic edema in different countries and health services across the world. The purpose of this study was to clarify the prevalence and the impact of chronic edema in Japan. This was a two-phase facility-based study to determine the prevalence and functional impact of chronic edema in the adult population in Japan between 2014 and 2015.

LIMPRINT: Prevalence of Chronic Edema in Health Services in Copenhagen, Denmark.

The International Lymphedema Framework developed an international study, Lymphedema Impact and Prevalence International (LIMPRINT), to estimate the prevalence and impact of chronic edema (CO) in heterogeneous populations. A validation study using the LIMPRINT methodology was undertaken in Denmark. Participants with CO were identified from inpatient services and compared with those identified within a specialist lymphedema service and three primary care settings.

LIMPRINT Study: The Turkish Experience.

Lymphedema and chronic edema is a major health care problem in both developed and nondeveloped countries The Lymphoedema Impact and Prevelance - International (LIMPRINT) study is an international health service-based study to determine the prevalence and functional impact in adult populations of member countries of the International Lymphoedema Framework (ILF). A total of 1051 patients from eight centers in Turkey were recruited using the LIMPRINT study protocol. Data were collected using the core and module tools that assess the demographic and clinical properties as well as disability and quality of life (QoL).

LIMPRINT: Estimation of the Prevalence of Lymphoedema/Chronic Oedema in Acute Hospital in In-Patients.

To estimate the prevalence of lymphedema/chronic edema (CO) and wounds in acute hospital inpatients in five different countries. A point-prevalence study was carried out during working day periods in six general hospitals in four countries (Denmark, France, United Kingdom, and Australia) and one hospital oncology inpatient unit in one other country (Ireland). The study used validated clinical tools for the assessment and collection of data.

Clinical and Ethical Challenges in Undertaking LIMPRINT in Vulnerable Populations.

To estimate the prevalence of chronic edema (CO) and wounds within two vulnerable populations, a male high security prison in the East Midlands (United Kingdom) and residential and nursing homes in the United Kingdom and Australia. Methods for screening for CO and wounds were adapted from the main LIMPRINT methodology. In total, 195 inmates were recruited with 22 (11%) having CO.

The Development and Validation of the LIMPRINT Methodology.

The acronym Limprint stands for Lymphedema IMpact and PRevalence INTernational and was run under the auspices of the International Lymphedema Framework (ILF), a charity dedicated to improving provision of care globally. The primary aim was to identify the number of people with chronic edema (chronic edema present for >3 months and due to a range of underlying etiologies and associated risk factors) within diverse health services in nine participating countries and to determine its impact using validated methods. An international protocol and sampling framework, online data capture system, and standard operating procedures were adopted.

LIMPRINT in Australia.

Australia was one of nine participating countries in the epidemiology Phase II Lymphoedema Impact and Prevalence - International (LIMPRINT) project to determine the number of people with chronic edema (CO) in local health services. Data collection occurred through questionnaire-based interviews and clinical assessment with provided LIMPRINT tools. Four different types of services across three states in Australia participated.

A Study Using Visual Art Methods to Explore the Perceptions and Barriers of Self-Management in Children and Adolescents with Lymphedema.

The aims of this study were to explore, using visual art methodology, how children and adolescents perceive their lymphedema and conceptualize the barriers and enablers in self-management and to explore the role of an educational camp in promoting self-efficacy. Participants (speaking English, French, and Italian) were recruited during an educational camp for children with lymphedema. Children and adolescents used different methodologies to depict living and self-managing their condition.

Non-adherence to treatment of chronic wounds: patient versus professional perspectives.

The reasons for the non-adherence to treatment for wound healing are complex and fall into unintentional and intentional categories. This study explored intentional and unintentional non-adherence to treatment from patient/carer and health care professional perspectives. Patients with wounds receiving ALLEVYN Life dressings (n = 20) and patients not receiving ALLEVYN Life dressings who were deemed to be non-adherent to treatment regimes (n = 6) took part in semi-structured interviews to explore their experiences of living with a wound, treatment and intentional and unintentional non-adherence.

Evaluation of the performance of a new compression system in patients with lymphoedema.

In the acute phase of lymphoedema, patients require comprehensive decongestive therapy (CDT), which includes skin care, an exercise regimen, manual lymphatic drainage (MLD) and regular bandaging. This study was established to determine the effectiveness of a new system of bandage therapy, the 3M™ Coban™ 2 compression system. In total, 24 patients were entered into the study (12 from UK and 12 from Canada) with a variety of clinical presentations.

The experience of patients with lymphoedema undergoing a period of compression bandaging in the UK and Canada using the 3M™ Coban™ 2 compression system.

This article reports on a qualitative study that explored the experience of patients who have undergone a period of complete decongestive therapy using the 3M™ Coban™ 2 compression system (Coban 2 system). Qualitative data were collected from 12 patients from the UK and 8 from Canada with a range of presentations of lymphoedema. Single semi-structured interviews were used and participants were asked questions relating to their experience of diagnosis, the impact of lymphoedema on their lives, previous treatment using multilayer lymphoedema bandaging and their experiences of the 3M™ Coban™ 2 system.

The challenges of managing complex lymphoedema/chronic oedema in the UK and Canada.

This article explores the professional challenges of treating patients with complex/severe forms of chronic oedema/lymphoedema with compression therapy. Four focus groups were held, two in the UK and two in Canada, to examine the challenges faced by practitioners in their everyday practice. A number of challenges were identified by participants in both countries and include the changing profile of lymphoedema/chronic oedema and how increasing complexity is outpacing the development of services and research-based guidelines.

The experience of children and families with lymphoedema--a journey within a journey.

This paper reports on a study in the UK that explored the experience of children suffering with Lymphoedema and that of their families. Qualitative data was collected from 20 children between the ages of 6 and 18 and their respective parents. Single, semi-structured interviews were used in which children and their parents were asked to share how lymphoedema impacted on their family life.