Practical steps for implementing quality measurement in practice.

Incorporating Quality Improvement Projects Into Stroke Care and Research.

BackgroundThe COVID-19 pandemic has highlighted the importance of mental wellbeing. The identification and implementation of quality measures can improve health outcomes and patient experience. The objective was to identify and define a core set of valid and relevant pediatric mental health quality measures that will support health system evaluation and quality improvement in British Columbia, Canada.MethodsThe study consisted of four phases. First, a comprehensive database search identified valid pediatric quality measures focused on mental health and substance use (MH/SU). Second, the identified quality measures were mapped to focus areas, which were then prioritized by two stakeholder groups consisting of 26 members. Third, up to two representative measures for each prioritized focus area were pre-selected by an expert panel (n = 9). And fourth, a three-step modified Delphi approach was employed to (1) assess each quality measure on a 7-point Likert scale against three relevance criteria (representative of a quality problem, value to intended audience and actionable), (2) discuss the results, and (3) select and rank the most relevant measures. Forty-eight stakeholders were invited to participate; of those 24 completed the round 1 survey, 21 participated in the round 2 discussion and 18 voted in the round 3 selection and ranking survey. For round 1, consensus was determined when at least 70% of the response rates were within the range of five to seven. For round 3, Kendall's coefficient of concordance W was used as an estimator of inter-rater reliability.ResultsOne-hundred pediatric mental health quality measures were identified in the database search. Of those, 37 were mapped to ten focus areas. Pre-selection resulted in 19 representative measures moving forward to the Delphi study. Eleven measures met the consensus thresholds and were brought forward to the round 2 discussion. Round 3 ranking showed moderate to strong raters' agreement (Kendall's W = 0.595; p < 0.01) and resulted in the following five highest-ranked measures: level of satisfaction after discharge from inpatient admission due to MH/SU, number of patients experiencing seclusion or restraint, length of time from eating disorder referral to assessment, number of ED visits due to MH/SU, and number of readmissions to ED.ConclusionThe selected core set of valid and relevant pediatric quality measures will support sustainable system change in British Columbia. The five top-ranked measures will be refined and tested for data collection feasibility before being implemented in the province.

Keywords: percutaneous coronary intervention; structural heart disease intervention; congential heart disease; adults; congenital heart disease; pediatrics

In the 2015 Medicare Access and CHIP Reauthorization Act, the Centers for Medicare and Medicaid Services (CMS) began the transition to a value-based payment system through implementation of the Quality Payment Program (QPP) ([1][1]). Representing a paradigm shift away from traditional volume-based

Last December, the Chronic Care Working Group (CCWG), a bipartisan collaboration of Senate Finance Committee members chaired by Senators Isakson (R-GA) and Warner (D-VA), released its policy options document.1 The CCWG had a formidable charge—to “analyze current law, discuss alternative policy options, and develop bipartisan legislative solutions” that increased care coordination across settings, streamlined Medicare payment while aligning incentives, facilitated high-quality care, produced better outcomes, and reduced growth in Medicare spending. The requirement that proposals be budget neutral or cost saving narrowed the choices. After reviewing more than 530 comments, the CCWG met with 80 stakeholder groups, ultimately recommending 24 options, including two that focused on improving the infrastructure of chronic care with better quality measures and more-accurate measures of cost for payment and computing shared savings. Of the proposals, 16 were for enhanced chronic care, with 11 focused on capitated payments (e.g., Medicare Advantage (MA)) or shared savings (accountable care organizations (ACOs), Independence at Home (IAH)) (Table 1). Despite government efforts to promote systems of care that feature cost containment strategies such as capitation (MA) or shared savings (ACOs), more than half of the 49 million Medicare beneficiaries continue to receive care from fee-for-service (Medicare A and B) providers, without spending constraints. Proposals to enhance care within traditional fee-for-service (FFS) Medicare were limited to new billing codes for high-intensity chronic care management, counseling regarding prognosis of serious illnesses, and limiting constraints on telemedicine for specific patient groups. There is wide recognition that Medicare spending is concentrated in beneficiaries with advanced chronic illness.2 Nearly half of FFS spending is for 5% of beneficiaries, the 1.7 million with annual spending exceeding $54,000 per person, compared with $9,900 for the average Medicare beneficiary. Recognizing where spending is concentrated is necessary but is only the first step toward creating targeted policy to advance high-quality care and reduce costs. Of the 34 demonstrations that CMS formally evaluated over the past 15 years,3 only two were substantially successful in reducing costs and increasing quality.4, 5 The main lessons from these demonstrations are not surprising. There is value in targeting high-cost beneficiaries and developing trusting human relationships where engaged patients and providers work toward common goals; there is significantly less cost savings and quality improvement in efforts where providers work by themselves, focus work on telephonic management, are disconnected from primary care, or focus merely on technology-assisted data acquisition and algorithm-driven care plans.4 Two notably successful FFS programs—Health Quality Partners and Massachusetts General Hospital (MGH)—relied on administrative fees to pay for provider time and additional personnel needed for managing complex patients. Both programs relied on engagement between care managers, patients, and providers; the MGH model embedded care managers in primary care practices. In contrast, patient-centered medical homes, despite a similar conceptual design, have had an uneven record in controlling costs, in part because of a less-targeted focus.6, 7 Several of CCWG's proposals favor expanding MA plan options and converting special needs plans (SNPs) to permanent status. These managed care organizations receive risk-adjusted capitation for each beneficiary, providing a strong incentive to actively manage their chronically ill members. A few provider–insurer organizations have proven effective at managing some of Medicare's frailest beneficiaries under capitation. Programs of All-inclusive Care for the Elderly (PACE), which typically operates small programs for 100 to 1,200 enrollees, now covering 34,000 frail elderly adults eligible for nursing facility care, and the Commonwealth Care Alliance dually eligible managed care organization (MCO) in Massachusetts are strong examples of effective care under a capitation model.8, 9 Although these organizations receive a risk-adjusted, capitated payment, the important feature is that providers and patients develop and manage the care plan in small groups. Another approach that has shown promise for these populations are Medicare shared savings programs (MSSPs), such as ACOs, which are also strongly incentivized, with rewards contingent on improving upon a risk-adjusted baseline cost target for assigned beneficiaries. CMS' evaluation of ACOs suggested that they saved $424 per beneficiary in their first year and $257 per beneficiary over 2 years.10 Several CCWG recommendations seek to make ACOs and other shared savings plans more accountable (e.g., by allowing prospective attribution by patients) and more flexible (e.g., broadening options to include nonmedical support services and relieving restrictions, such as the homebound status requirement for home health care.) The CCWG logic is clear—with a budget constraint, fewer of the rules to control overuse observed under FFS payment are needed, rules which may have perverse effects on outcomes and costs. Topping the CCWG's list of options is Independence at Home (IAH), a 3-year demonstration (2012–15) that Congress unanimously extended for 2 years in June 2015.11 The favorable initial published results are consistent with those of the successful Department of Veterans Affairs national Home Based Primary Care (HBPC) program12 and other published HBPC models.13-15 IAH rests on three precepts: focus on the most frail, immobile, and costly beneficiaries; use mobile interdisciplinary provider teams led by physicians and nurse practitioners responsible for their care and accountable across the health spectrum; and align incentives. IAH's novel approach to “shared savings with discipline” uses eligibility criteria identifiable in CMS administrative data,1 so that the savings baseline can be accurately calibrated. It allocates the first 5% of savings to CMS, after which there is an opportunity for shared savings, and IAH disqualifies practices that fail to achieve savings or to meet three of six quality metrics after 2 years. CMS found that IAH practices saved more than $25 million during the first performance year—an average of $3,070 per beneficiary—while delivering high-quality care. With 8,400 frail elderly adults enrolled, Year 1 savings were 7.7%, with nine of 17 (53%) practices achieving the 5% savings threshold (range $2,676–13,068/patient-year). For those nine practices, the average savings rate was 17%, with the top-performing practice reducing costs by 32%. Successful practices were broadly representative, coming from medium and large academic centers, and private for-profit and nonprofit corporate and community practices. Although IAH programs managed fewer than 1% of the number of individuals in the original 32 ACOs (Pioneer ACOs), IAH generated nearly 9% of the combined first year CMS savings of Pioneer ACOs and IAH.10 Unlike the two-sided risk in the Pioneer ACO model, in IAH, discipline comes from being disqualified and thus unable to share in substantial achievable savings. Using the 2012 Medicare 5% beneficiary file, it was estimated that 2.2 million Medicare beneficiaries meet IAH criteria,1 6.2% of all FFS beneficiaries, with 40% of the 5% most-expensive beneficiaries in 2012. Of all Medicare FFS beneficiaries, these individuals represented 23% of the deaths, 43% of Medicare readmissions, 37% of new long-term institutional stays, and 28% of FFS spending, validating the targeting criteria. Over the next decade, if home-based primary care through IAH reached only 35% of this population, maintaining the first year demonstration experience, it is likely that it would generate savings exceeding $35 billion, with CMS retaining more than $17 billion,16 which is within 3% of the estimated savings from applying VA's HBPC experience to 35% of the IAH-eligible Medicare population. The congruence of effectiveness between VA's national program and the CMS demonstration gives support to the estimate. Two of the CCWG's recommendations are crucial for cost containment in FFS Medicare, applicable to ACOs and IAH: developing more-accurate risk adjustment models for the highest-cost beneficiaries and developing appropriate quality metrics, with a focus on patient experience. The current system of risk assessment for ACOs relies on hierarchical condition categories (HCCs) to develop cost benchmarks.17 Analyses of beneficiaries similar to those qualified for IAH18 have confirmed other reports19 that current HCC models, calibrated on the entire Medicare population, substantially underpredict costs for a selected population, with mortality four times as great, costs five times as high, and more than half of beneficiaries joining a practice being clinically unstable at enrollment. HCC predicted costs also have wide geographic variation whereas frail beneficiaries are more similar cost-wise between low- and high-cost counties. In PACE, a combination of PACE rates, the PACE HCC model, and PACE frailty adjusters have effectively addressed these phenomena.8, 14 Similar recalibration of the HCC model to account for mortality risk, frailty, and local variability among individuals meeting IAH qualifying criteria is needed while incorporating a time-dependent clinical instability factor.18 Quality metrics offer a balancing force for shared savings incentives. In contrast to the large suite of measures for ACOs, the IAH demonstration used six quality measures to moderate savings shares: soliciting patient preferences; improving care transitions through home visits within 48 hours; including medication reconciliation after a hospitalization or emergency department visit; and validated, care-sensitive usage metrics (30-day readmissions, ambulatory care–sensitive hospitalizations, and emergency department visits). The National Home-Based Primary and Palliative Care Network is field testing additional metrics, particularly ones focused on patient and caregiver experiences.20 Effective, efficient chronic illness management requires making decisions about goals and value. The potential for shared savings to provide the needed constraint in FFS Medicare should foster the transition from volume to value while keeping the provider–patient relationship at the center, giving people care that they want and need. The CCWG's lead option, converting IAH to a Medicare benefit, will advance that transition, achieving the CCWG's goals of coordinating care across sites, aligning incentives, and improving outcomes while lowering costs. Conflict of Interest: The editor in chief has reviewed the conflict of interest checklist provided by the authors and has determined that the authors have no financial or any other kind of personal conflicts with this paper. Drs. Kinosian, Taler, and Boling are participants in the IAH Demonstration, as are the other 14 members of the IAH Learning Collaborative Writing Group. Drs. Kinosian, Taler, and Boling have provided testimony to CMS and the Senate Finance Committee's Chronic Care Working Group, as well as MedPAC, on the Independence at Home demonstration. Dr. Kinosian is a board member of the American Academy of Home Care Medicine; Drs. Taler and Boling are past board members. Author Contributions: Kinosian: design, analysis, manuscript preparation. Boling, Taler: design, manuscript preparation. Sponsor's Role: NA.

Nine States' Use of Collaboratives to Improve Children's Health Care Quality in Medicaid and CHIP

The Centers for Medicare & Medicaid Services (CMS) Nursing Home Quality Initiative aims to improve quality through performance measurement. We describe quality improvement (QI) changes that skilled nursing facilities (SNFs) reported making in response to CMS performance measurements and whether reported QI changes were associated with better performance on CMS performance measures. Nationally representative survey. A total of 15,475 SNFs that reported quality performance on Nursing Home Compare in 2016. A total of 1,182 SNFs (58% of random sample of 2,045 SNFs). Adoption of 22 possible QI changes, grouped into seven categories (organizational culture, health information technology, care process redesign, provider incentives, changes to staffing responsibilities, performance monitoring, and measure-specific QI initiatives and technical assistance); performance on the CMS Nursing Home Compare Five-Star Quality Rating System's quality measure rating. SNFs reported making an average of 13 QI changes (interquartile range = 11-16 changes). SNFs mostly commonly reported becoming a learning organization (87%) and providing training to staff on QI strategies (87%). After controlling for patient and facility characteristics, larger SNFs were more likely to obtain assistance on measure reporting from QI organizations and use provider champions than smaller SNFs by 14 and 11 percentage points, respectively. Rural SNFs and SNFs with higher proportions of disabled, black, or Hispanic residents adopted QI changes at similar rates as other SNFs. Of the 22 QI changes, 20 were considered at least somewhat helpful by more than 80% of adopting SNFs. Implementation of all 22 QI changes (vs no changes) was associated with a .48-star higher quality measure rating (95% confidence interval = .003-.98 stars; P = .05). In response to CMS measurement programs, SNFs reported making substantial QI investments that were associated with better performance on CMS quality measures. To guide future SNF investments in QI, work is needed to identify the QI changes that yield the greatest performance improvements.

To review the literature on the subject of quality improvement principles and methods applied to pharmacy services and to describe a framework for current and future efforts in pharmacy services quality improvement and effective drug therapy management. The Academy of Managed Care Pharmacy produced the Catalog of Pharmacy Quality Indicators in 1997, followed by the Summary of National Pharmacy Quality Measures in February 1999. In April 2002, AMCP introduced Pharmacy's Framework for Drug Therapy Management in the 21st Century. The Framework documents include a self-assessment tool that details more than 250 specific "components" that describe tasks, behaviors, skills, functions, duties, and responsibilities that contribute to meeting customer expectations for effective drug therapy management. There are many opportunities for quality improvement in clinical, service, and cost outcomes related to drug therapy management. These may include patient safety; incidence of medical errors; adverse drug events; patient adherence to therapy; attainment of target goals of blood pressure, glucose, and lipid levels; risk reduction for adverse cardiac events and osteoporotic-related fractures; patient satisfaction; risk of hospitalization or mortality; and cost of care. Health care practitioners can measure improvements in health care quality in several ways including (a) a better patient outcome at the same cost, (b) the same patient outcome at lower cost, (c) a better patient outcome at lower cost, or (d) a significantly better patient outcome at moderately higher cost. Measurement makes effective management possible. A framework of component factors (e.g., tasks) is necessary to facilitate changes in the key processes and critical factors that will help individual practitioners and health care systems meet customer expectations in regard to drug therapy, thus improving these outcomes. Quality improvement in health care services in the United States will be made in incremental changes that rely on a structure-process-outcome model. The structure is provided by evidence created from controlled randomized trials and other studies of care and system outcomes that are based on the scientific method. The process portion is created by the application of evidence in the form of clinical practice guidelines, clinical practice models, and self-assessment tools such as Pharmacy's Framework for Drug Therapy Management. Incremental changes in structure and process will result in the desirable outcome of meeting customer needs for more effective drug therapy and disease management.

Consistent with the growing national focus on healthcare quality, the American College of Cardiology Foundation (ACCF) and the American Heart Association (AHA) have taken a leadership role over the past decade in developing measures of the quality of cardiovascular care by convening a joint ACCF/AHA Task Force on Performance Measures. The Task Force is charged with identifying the clinical topics appropriate for the development of performance measures and with assembling writing committees composed of clinical and methodological experts in collaboration with appropriate subspecialty societies. The Task Force has also created methodology documents that offer guidance in the development of process, outcome, composite, and efficiency measures. Cardiovascular performance measures using existing ACCF/AHA methodology are based on Class I or Class III guidelines recommendations, usually with Level A evidence. These performance measures, based on evidence-based ACCF/AHA guidelines, remain the most rigorous quality measures for both internal quality improvement and public reporting. However, many of the tools for diagnosis and treatment of cardiovascular disease involve advanced technologies, such as cardiac imaging, for which there are often no underlying guideline documents. Because these technologies affect the quality of cardiovascular care and also have the potential to contribute to cardiovascular health expenditures, there is a need for more critical assessment of the use of technology, including the development of quality and performance measures in areas in which guideline recommendations are absent. The evaluation of quality in the use of cardiovascular technologies requires consideration of multiple parameters that differ from other healthcare processes. The present document describes methodology for development of 2 new classes of quality measures in these situations, appropriate use measures and structure/safety measures. Appropriate use measures are based on specific indications, processes, or parameters of care for which high level of evidence data and Class I or Class III guideline recommendations may be lacking but are addressed in ACCF appropriate use criteria documents. Structure/safety measures represent measures developed to address structural aspects of the use of healthcare technology (e.g., laboratory accreditation, personnel training, and credentialing) or quality issues related to patient safety when there are neither guidelines recommendations nor appropriate use criteria. Although the strength of evidence for appropriate use measures and structure/safety measures may not be as strong as that for formal performance measures, they are quality measures that are otherwise rigorously developed, reviewed, tested, and approved in the same manner as ACCF/AHA performance measures. The ultimate goal of the present document is to provide direction in defining and measuring the appropriate use-avoiding not only underuse but also overuse and misuse-and proper application of cardiovascular technology and to describe how such appropriate use measures and structure/safety measures might be developed for the purposes of quality improvement and public reporting. It is anticipated that this effort will help focus the national dialogue on the use of cardiovascular technology and away from the current concerns about volume and cost alone to a more holistic emphasis on value.

Using Qualitative and Quantitative Patient Satisfaction Data to Improve the Quality of Cardiac Care

Patient and family caregiver experience is pivotal for integrated care, providing guidance for care coordination, decision-making, quality improvement, communication, and cultural transformation. By actively obtaining and responding to feedback, healthcare systems can enhance the effectiveness and responsiveness of integrated care, ultimately leading to improved outcomes and satisfaction for patients and their family caregivers. However, there is a notable gap in research addressing the effective utilization of diverse methods for collecting patient experience data to drive healthcare improvements. The aim of this scoping review was to address that gap by exploring the literature to examine the methods of obtaining, analysing, reporting, and using patient experience data for quality improvement in post-acute rehabilitation settings. The review followed the JBI guidelines and Arksey &amp; O’Malley methodological framework. A comprehensive search was performed across four databases (OVID MEDLINE; CINAHL; APA PsycINFO; COCHRANE) to capture the extent of the literature on this topic relevant to rehabilitation. Qualitative and quantitative studies (2012-2023) describing collection of patient experience data with the intent of using it for healthcare improvement in post-acute rehabilitation settings were included. After screening and data extraction, qualitative content analysis and thematic mapping were utilised to explore the selected studies. Of 3570 initial records, 160 full texts were screened, and 30 were included in the final analysis. Majority of included studies were conducted among hospital patients, during admission (43.3%) or within three weeks post-discharge (13.3%). Caregiver experiences were gathered in conjunction with patient data in 40% of the studies. Most studies (70%) employed qualitative data collection methods, using semi-structured interviews or focus groups to elicit patient experience data, which indicates the need to speak directly with people regarding their care experience. On four occasions (13.3%), a mixed-methods approach was used, with a questionnaire administered alongside qualitative methods. In six (66.6%) of the quantitative studies, self-developed questionnaires were used rather than validated instruments. This may suggest that the routinely collected patient data are infrequently used for quality improvement initiatives within rehabilitation settings. This evidence synthesis highlights the diverse methods used and contexts in which patient and family caregiver experience has been gathered in post-acute rehabilitation settings. Several papers mentioned quality improvement based on collected patient experience data but did not provide details of quality improvement activities or their corresponding impact. Few papers offered recommendations for policy or practice changes. Studies utilizing patient experience data reported a diverse array of small improvements to specific aspects of care (e.g., changes to discharge process or hospital documentation), or the development of educational materials or toolkits for patient use. This indicates there is underutilized potential for using patient experience data to improve rehabilitation care and services. This scoping review provides a better understanding of how patient experience is being utilised in post-acute settings. However, it demonstrates the need for methodological rigor and transparency in future research when reporting how patient and family caregiver data is used for improving healthcare quality and integration. Future research should clearly articulate Patient and Public Involvement (PPI) in the research process, including implementation and evaluation.

Suboccipital decompression is a common procedure for patients with Chiari malformation Type I (CMI). Published studies have reported complication rates ranging from 3% to 40%, with pseudomeningocele being one of the most common complications. To date, there are no studies assessing the effect of this complication on long-term outcome. Therefore, the authors set out to assess the effect of symptomatic pseudomeningocele on patient outcomes following suboccipital decompression for CM-I. The study comprised 50 adult patients with CM-I who underwent suboccipital craniectomy and C-1 laminectomy with or without duraplasty. Clinical presentation, radiological studies, operative variables, and complications were assessed for each case. Baseline and 1-year postoperative patient-reported outcomes were assessed to determine improvement in pain, disability, and quality of life. The extent of improvement was compared for patients with and without development of a postoperative symptomatic pseudomeningocele. A symptomatic pseudomeningocele developed postoperatively in 9 patients (18%). There was no difference with regard to clinical, radiological, or operative variables for patients with or without a postoperative pseudomeningocele. Patients without a pseudomeningocele had significant improvement in all 9 patient-reported outcome measures assessed. On the other hand, patients with pseudomeningocele only had significant improvement in headache (as measured on the Numeric Rating Scale) and headache-related disability (as measured on the Headache Disability Index) but no improvement in quality of life. Twenty-nine (71%) of 41 patients without a pseudomeningocele reported improvement in health status postoperatively compared with only 3 (33%) of 9 patients with a postoperative pseudomeningocele (p = 0.05). Surgical management of CM-I in adults provides significant and sustained improvement in pain, disability, general health, and quality of life. Development of a postoperative symptomatic pseudomeningocele has lingering effects at 1 year, and it significantly diminishes the overall benefit of suboccipital decompression for CM-related symptoms. Further research is needed to accurately predict which patients may benefit from decompression alone without duraplasty.

EDITORIAL

There are obstacles to effective nationwide implementation of a culture of patient safety. Plastic surgery faces unique challenges in this area because quality measures are not as well-established as in other fields. Plastic surgery may also require emphasis on patient-reported outcomes as a quality-of-life specialty with distinct concomitant analytical methods. We devised a dynamic framework, based on our 3-year experience using a Comprehensive Unit-Based Safety Program-a formal quality improvement committee structure, literature review, and work from The Johns Hopkins Armstrong Institute for Patient Safety and Quality. This framework is specific and exportable to the field of plastic surgery. Monthly patient safety, quality, and service committee meetings encourage multilevel participation in a bottom-up fashion, while connecting with other departments and entities in Johns Hopkins Medicine. Our model focuses our work in the following four domains: (1) safety, (2) external measures, (3) patient experience, and (4) value. Our framework identifies and communicates clear goals, creates necessary infrastructure, identifies opportunities and needs, uses robust performance to develop and implement interventions, and includes analytics to track improvement plans and results. We have gradually implemented this quality improvement structure into the Johns Hopkins Department of Plastic and Reconstructive Surgery successfully since 2012. Outcomes have improved in externally reported measures of patient safety, quality, and service. We have demonstrated exemplary National Surgical Quality Improvement Program performance for morbidity, return to operating room, and readmission rates. Patient satisfaction surveys show improvement related to the high-level patient experience.

IntroductionLymphoedema is an incurable, progressive condition, which results in the swelling of a limb or limbs and impairs mobility (Lymphatic Framework, 2006). The psychosocial impact of lower limb lymphoedema is also devastating as body image and quality of life are greatly affected (Lasinski et al, 2012). Although lymphoedema is a chronic condition, it is manageable through treatment modalities which include manual lymphatic drainage, compression bandaging, compression hosiery, skin care and exercise, otherwise known as Complex Decongestive Therapy (CDT) (Todd, 2012). The area of lower limb, non-cancer related, lymphoedema is poorly resourced and poorly researched, therefore this thesis proposes to explore treatment outcomes for patients with non-cancer related lower limb lymphoedema during the intensive and maintenance phases of CDT,examine their experiences of living with lymphoedema and the challenges of lifelong self-care maintenance.Research QuestionsThe research questions for the study were as follows;1. What is the impact of Complex Decongestive Therapy (CDT) as a treatment for primary and secondary lower limb lymphoedema during the intensive and maintenance phases of CDT, in relation to;a. Quality of life?b. Limb circumferential and volumatic changes?c. Self-efficacy in managing lymphoedema self care?2. What are the patients’ experiences of living with lymphoedema?3. What are the patients’ experiences of the four elements of CDT used during the intensive and maintenance phases of treatment?Aims & ObjectivesThe aims of this study were twofold;1. To examine the impact of Complex Decongestive Therapy (CDT) as a treatment for primary and secondary, non-cancer related, lower limb lymphoedema during the intensive and maintenance phases of CDT;2. To explore the experiences of patients with primary and secondary, non-cancer related lower limb lymphoedema during the intensive and maintenance phases of CDT.The objectives of the study are as follows:1. To determine the impact of CDT on limb circumference and quality of life.2. To explore the patients’ experience of living with lymphoedema.3. To investigate the patients’ reported experience of the four elements of CDT.4. To examine the patients’ reported maintenance regimen of self-care and its resulting effect on limb volume and quality of life.MethodsA mixed methodology, using both quantitative and qualitative data in a sequential manner was used. This study was divided into 3 parts,Part 1 a quantitative approach was used to measure;a) Limb volume changes.b) Quality of Life changesc) Self-efficacyPart 2 –A qualitative approach was used to analyse data from face to face, semi-structured interviews with 18 participants exploring the experiences of patients living with lymphoedema and their experiences of Complex Decongestive Therapy.Part 3 – Descriptive analysis of 18 participant diaries was used during maintenance self-care, over a 4-month period, to examine the participants’ experiences of lymphoedema self care.ResultsA purposive sample of 20 participants were recruited to this study All participants were diagnosesd with lower limb lymphoedema, 10 participants had primary lymphoedema and 10 participants had secondary, non-cancer related lymphoedema. The study setting was a lymphoedema clinic in the Midlands of Ireland, run by the researcher who is also a Tissue Viability Nurse and Manual Lymphatic Drainage Therapist.The findings included a reduction in limb volume from baseline to week 8 during intensive therapy and then a fluctuation of oedema for 6 of the participants during the 4-month self-maintenance period. Quality of life improved for all participants from baseline to week 24. Thematic analysis of the interviews identified themes of lack of knowledge, delayed diagnosis, physical, psychosocial and financial burden of lymphoedema and positive therapeutic effect of treatment. The diary analysis identified self-care challenges that were influenced by elevated body mass index and carer support.ConclusionPrimary and secondary, non-cancer related lower limb lymphoedema is an area of lymphoedema that is poorly researched. It is also true to say that there is a sparsity of research in the area of lymphoedema self maintenance care. The aims of this research study were twofold, to explore patient outcomes with regard to limb volume, quality of life and self-efficacy during the intensive and maintenance phases of CDT and to examine the experiences of the patients living with lymphoedema, during their treatment and following on into self maintenance. The findings included reduction in limb volume during therapy, an improvement in quality of life and a fluctuation in self-efficacy that was influenced by elevated body mass index. Thematic analysis of interviews concluded that living with lymphoedema poses many challenges resulting from poor knowledge within the health professions and a lack of referral pathways and services. The success of lymphoedema self maintenance is greatly influenced by the patients physical ability and support structures, especially in the case of the patient with an elevated body mass index.