Chronic oedema: a prevalent health care problem for UK health services

Chronic oedema is a major clinical problem worldwide, which has many important secondary consequences for health, activity and participation. Effective treatment planning and organisation of services is dependent on an understanding of the condition and its epidemiology. This cross sectional study was designed to estimate the point prevalence of chronic oedema within the health services of one UK urban population and to determine the proportions that have concurrent leg ulceration. Patients with chronic oedema were ascertained by health care professionals in one acute and one community hospital, all relevant out-patient and community nursing services, general practices and all nursing/residential homes in one urban catchment area (Derby City). The presence and distribution of oedema was confirmed through a brief clinical examination. A battery of demographic and clinical details was recorded for each case. Within the study population of Derby City residents, 971 patients were identified with chronic oedema (estimated crude prevalence 3.93 per 1,000, 95% CI 3.69-4.19). The prevalence was highest amongst those aged 85 or above (28.75 per 1,000) and was higher amongst women (5.37 per 1,000) than men (2.48 per 1,000). The prevalence amongst hospital in-patients was 28.5%. Only 5 (3%) patients in the community population had oedema related to cancer or cancer treatment. Of the 304 patients identified with oedema from the Derby hospitals or community health services 121 (40%) had a concurrent leg ulcer. Prevalence statistics and current demographic trends indicate that chronic oedema is a major and growing health care problem

Psychological Factors in chronic edema: a case–control study

Objective: To examine psychological health and perceived social support in patients with chronic oedema (CO). Methods: A random sample of patients who had been previously identified within a chronic oedema (CO) service in an urban area of south west London were group matched for age and gender with community controls in a case control study. Results: One hundred and seven cases and 102 controls (women 82%) were identified. CO was caused by cancer or its treatment in 51 (48%) of cases and affected the leg in 65 (61%); the arm 41(38%) and the limb and midline in 15 (14%). Length of time with CO was long with 50 (47%) suffering for > 10 years. Cases were more likely to be single or divorced/separated (p=0.041) and have reduced mobility (p <0.001). SF36 scores showed cases had significantly poorer overall HRQOL in particular: physical functioning (p=0.003); role physical (p <0.001) general health (p=0.026); vitality (p=0.015); social function (p=0.007) and role emotional (p=0.041). EQ5D health index scores were significantly reduced in cases by 13 points (P= <0.001, 95% CI 5.8, 21.6) compared with controls with a similar pattern for the VAS scale (p< 0.00 95% CI 7.6, 17.1). The MOS scale showed cases had similar size social networks to the control group (5.8/6.6 p=0.49) but had lower total perceived social support scores (67.8/76.1 p=0.018). Cases had reduced support in all 5 domains with tangible and affectionate support significantly reduced for cases compared to controls. Cases used significantly fewer coping strategies (COPE scale) than controls with regard to: active coping (p=0.024); planning (p<0.001) and use of instrumental support (p=0.006). Significantly higher levels of coping were used by cases for the following domains: restraint (p=0.031), positive reinterpretation and growth (p<0.001); acceptance (<0.001); denial (p<0.001); mental disengagement (p<0.001); 3 behavioural disengagement (<0.001): substance abuse (p=0.010) and humour (p<0.001). Conclusions: Patients with CO have poorer health and greater impact on many aspects of HRQOL. While the size of social networks they report appear preserved, the levels of perceived social support are reduced. The pattern of use of coping strategies was complex with evidence of reduced problem solving combined with enhanced emotion focused coping such as acceptance and reinterpretation indicating illness adjustment. Deficits in the ability to function socially combined with perceived reduction in support and reduced mental health and emotional scores within the SF36 scale indicate the risk of developing psychological issues such as depression. Systems of care should offer an environment to address these issues

A study to explore the parental impact and challenges of self-management in children and adolescents with lymphedema

Background: Limited research has shown the impact lymphedema has on children and families. The aim of this study was to explore the parental experience of caring for a child or adolescent with lymphedema and the daily challenges of self-management and self-efficacy. Methods and Results: Participants were recruited during an educational camp for children with lymphedema (N = 26). Three individual semistructured focus groups were undertaken in English, French, and Italian with simultaneous translation. Data were analyzed using interpretative phenomenological analysis. Analysis identified four superordinate themes; the journey, treatment management, independence, and psychosocial impact. Ten subthemes were identified: bandaging/compression, professional support, holistic care, fear, self-efficacy, acceptance, friendship, guilt, distress, and hope. Conclusions: Parental self-management of children with lymphedema is complex and invades many aspects of life. Lack of professional agreement over what constitutes self-management leads to parental confusion and anxiety. Self-management is demanding, and parents are ambivalent to its effectiveness, but choose to persevere through fear of their child's condition deteriorating. Self-efficacy is evident in complex problem solving, despite parents believing that they are not adequately prepared for this

LIMPRINT: the UK experience - subjective control of swelling in patients attending specialist lymphedema services

Background and study design: This study was undertaken as part of the UK LIMPRINT international study to determine the number of people with chronic oedema and its impact on health services. Overall 7436 with chronic oedema (CO) were recruited in the main UK study from a range of health settings. Methods and results: Subjective control of arm and leg chronic oedema (CO) was defined for patients attending three Lymphoedema services in the UK. Of the total available in the UK dataset 5165 (69.4%)/ 7436(100%) of participants were included. Reasons for exclusions included the following: lack of information (1669), having both arm and leg swelling (272), lack of description of control (5) and professional inability to decide whether CO was controlled (325). Arm swelling occurred in 953 (18.5%), with leg CO in 4212 (81.5%). Poor control was found in 1430 (27.7%) and good control in 3735 (72.3%). Control of arm swelling was worse in men and control increased overall in those aged over 45 years. In contrast control of CO worsened in those with leg CO with increasing age and multiple co-morbidities. Obesity and cellulitis, particularly an episode in the last year were associated with poor control. Independent risk factors for arm CO were obesity, neurological disease and cellulitis in the last year and for leg CO: obesity, poor mobility, heart disease, presence of a wound, cellulitis in the last year and duration of swelling. Conclusion: Control of CO within specialised centres is complex due to sociodemographic and clinical comorbidities

The prevalence and functional impact of chronic edema and lymphedema in Japan: LIMPRINT study

Background: 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. Methods and Results: 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. The prevalence study involved a university hospital, an acute community hospital, and a long-term medical facility. The impact study involved 6 facilities, including two outpatient clinics in acute care hospitals (one led by a physician and the other led by a nurse), inpatient wards in two acute care hospitals, and two nursing home/long-term care facilities. Various questionnaires and clinical assessments were used to gather patient demographic data and assess the functional impact of chronic edema. The results showed that: chronic edema was much more prevalent in the long-term care facility than in acute care hospitals; cellulitis episodes occurred in approximately 50% of cases in the gynecologist-led outpatient clinic, even though >80.0% of patients received standard management for edema; edema was found in the trunk region, including the buttock, abdomen, and chest-breast areas, in addition to the upper and lower limbs; and subjective satisfaction with edema control was low, even though the quality of life scores were good. Conclusions: The prevalence of chronic edema varied according to the facility type, ranging from 5.0% to 66.1%. The edema was located in all body parts, including the trunk region. Subjective satisfaction with control of edema was poor, while general quality of life was good. This large health care issue needs more attention

A qualitative national focus group study of the experience of living with lymphoedema and accessing local multiprofessional lymphoedema clinics

Aim. The aim of this study was to explore people’s experiences of living withlymphoedema and to assess the impact of access to local lymphoedema clinics ontheir condition and thus their lives.Background. A chronic condition caused by reduced lymphatic function,lymphoedema leads to swelling, pain and mobility problems and can adverselyaffect quality-of-life. It is of international concern as its prevalence is rising. Yetlymphoedema awareness is limited, diagnostic delay common and access tospecialist treatment restricted. The concept of local lymphoedema clinics isgaining support and in 2011 the All Wales Lymphoedema Service was founded.However, empirical investigation of local lymphoedema services remains limited.Design. A qualitative exploratory study consisting of focus group interviews inevery Welsh lymphoedema clinic (n=8).Methods. A convenience sample of adults living with lymphoedema in Wales wasrecruited. Data were collected in digitally recorded focus groups during July andAugust 2013. Interviews were fully transcribed and analysed using a qualitativecontent approach.Findings. Fifty-nine people participated in eight focus groups. Analysis revealedthree themes: Living with lymphoedema is a battle; delays in obtaining a correctdiagnosis and the positive impact of lymphoedema clinics on participants’ lives.Locally accessible clinics made meaningful differences to peoples’ lymphoedema,engendered positive outcomes and improved engagement with and adherence tolymphoedema self-management.Conclusions. Local specialist lymphoedema clinics can make a positive difference.They may be cost-effective and further investigation, including economicevaluation is necessary