Development of a core outcome set for breast cancer-related lymphedema: a Delphi study.

PURPOSE: For breast cancer survivors (BCS) living with breast cancer-related lymphedema (BCRL), what outcome domains (OD) should be measured to assess the burden of the disease and efficacy of interventions? A Core Outcome Set (COS) that promotes standardized measurement of outcomes within the constraints of time influenced by work environments is essential for patients and the multidisciplinary professionals that manage and research BCRL. METHODS: Using Delphi methodology, a multidisciplinary group of BCRL experts (physical and occupational therapists, physicians, researchers, physical therapist assistants, nurses, and massage therapist) completed two waves of online surveys. BCRL expert respondents that completed the first survey (n = 78) had an average of 26.5 years in practice, whereas, respondents who completed the second survey (n = 33) had an average of 24.9 years. ODs were included in the COS when consensus thresholds, ranging from 70% to 80%, were met. RESULTS: A total of 12 ODs made up the COS. Reaching a minimum consensus of 70%; volume, tissue consistency, pain, patient-reported upper quadrant function, patient-reported health-related quality of life, and upper extremity activity and motor control were recommended at different phases of the BCRL continuum in a time-constrained environment. Joint function, flexibility, strength, sensation, mobility and balance, and fatigue met an 80% consensus to be added when time and resources were not constrained. CONCLUSION: The COS developed in this study thoroughly captures the burden of BCRL. Using this COS may reduce selective reporting, inconsistency in clinical use, and variability of reporting across interdisciplinary healthcare fields, which manage or research BCRL.

Development of a core set of outcome measures to be applied toward breast cancer-related lymphedema core outcome domains.

PURPOSE: For breast cancer survivors (BCS) living with breast cancer-related lymphedema (BCRL), what outcome measures (OMs) are recommended to be used to measure standardized outcome domains to fully assess the burden of the disease and efficacy of interventions? An integral component of a standardized core outcome set (COS) are the OMs used to measure the COS. METHODS: A supplemental online survey was linked to a Delphi study investigating a COS for BCRL. OMs were limited to a maximum of 10 options for each outcome domain (OD). There were 14 ODs corresponding to the International Classification of Functioning, Disability, and Health (ICF) framework and respondents rated the OMs with a Likert level of recommendation. The feasibility of the listed OMs was also investigated for most outpatient, inpatient, and research settings. RESULTS: This study identified 27 standardized OMs with a few ODs having 2-3 highly recommended OMs for proper measurement. A few of the recommended OMs have limitations with reliability due to being semi-quantitative measures requiring the interpretation of the rater. CONCLUSION: Narrowing the choices of OMs to 27 highly recommended by BCRL experts may reduce selective reporting, inconsistency in clinical use, and variability of reporting across interdisciplinary healthcare fields which manage or research BCRL. There is a need for valid, reliable, and feasible OMs that measure tissue consistency. Measures of upper extremity activity and motor control need further research in the BCS with BCRL population.

Lymphedema self-care: economic cost savings and opportunities to improve adherence.

BACKGROUND: Breast cancer-related lymphedema (BCRL) imposes a significant economic burden on patients, providers, and society. There is no curative therapy for BCRL, but management through self-care can reduce symptoms and lower the risk of adverse events. MAIN BODY: The economic burden of BCRL stems from related adverse events, reductions in productivity and employment, and the burden placed on non-medical caregivers. Self-care regimens often include manual lymphatic drainage, compression garments, and meticulous skin care, and may incorporate pneumatic compression devices. These regimens can be effective in managing BCRL, but patients cite inconvenience and interference with daily activities as potential barriers to self-care adherence. As a result, adherence is generally poor and often worsens with time. Because self-care is on-going, poor adherence reduces the effectiveness of regimens and leads to costly treatment of BCRL complications. CONCLUSION: Novel self-care solutions that are more convenient and that interfere less with daily activities could increase self-care adherence and ultimately reduce complication-related costs of BCRL.

Lymphoedema, a significant health problem in Israel: A descriptive community-based study.

Lymphoedema (LE) is recognised as a chronic disabling disease. Knowledge on patient characteristics, treatments, and outcomes in Israel is lacking. The aim of the study was to (a) describe demographic and health characteristics, treatments, utilisation, and functional outcomes of patients receiving physical therapy due to LE in a large nationwide healthcare provider in Israel; and (b) assess the feasibility of conducting a future practice-based evidence (PBE) study. This is a retrospective observational cohort study. Descriptive analyses of an electronic medical record database were performed. Data from 6013 patient episodes were analysed. A high proportion of patients had two or more comorbidities (80%) and chronic medication use (85%) with increasing rates over the 8-year period. The most frequent LE classification was stage 2 (45%). A majority of LE was in the lower limbs (51%) with increasing rates over the years. The most frequent treatment-related activity was measuring limb circumference and the most frequent intervention was educating for self-management. This study provides a first comprehensive description of patient characteristics receiving physical therapy for LE in Israel. The available database offers an opportunity for PBE studies. Recommendations for improvements in specific data collection processes were identified.

Recent progress in the treatment and prevention of cancer-related lymphedema.

This article provides an overview of the recent developments in the diagnosis, treatment, and prevention of cancer-related lymphedema. Lymphedema incidence by tumor site is evaluated. Measurement techniques and trends in patient education and treatment are also summarized to include current trends in therapeutic and surgical treatment options as well as longer-term management. Finally, an overview of the policies related to insurance coverage and reimbursement will give the clinician an overview of important trends in the diagnosis, treatment, and management of cancer-related lymphedema.

A systematic review of m-health apps on managing side effects of breast cancer treatment.

PURPOSE: After breast cancer treatment, women with breast cancer may experience distress caused by treatment side effects, both in physical and psychological aspects. Technology use is increasing in favor among women. Therefore, it is essential to update the scientific evidence regarding mobile and web apps' effectiveness in managing the side effects of breast cancer treatments for breast cancer survivors. The purpose of this systematic review was to investigate the scientific evidence on the effectiveness of mobile and web apps in managing the side effects of breast cancer treatments among this group. METHODS: A literature search was conducted using ScienceDirect, Scopus, PubMed, CINAHL, and Cochrane. Published papers in English focused on mobile and web apps and the side effects of breast cancer treatment in breast cancer survivors were selected. The search reviewed studies from January 2011 to December 2021. From a total of 925 retrieved manuscripts, 11 studies were included for analysis. RESULTS: The findings showed that mobile apps were more frequently used and more likely to be an effective method for managing the side effects of breast cancer treatment among breast cancer survivors. The content in web or mobile apps for breast cancer survivors should include five categories: (1) information about cancer, (2) overview of cancer care, (3) opportunities for interaction with other people, (4) symptom management strategies, and (5) feedback about cancer treatment side effect management. However, a few studies examined the effects of a combination of mobile and web apps in managing breast cancer treatment side effects. Therefore, future research is needed to examine solo and combination use. In addition, more rigorous studies are warranted to examine these interventions. CONCLUSIONS: Nurses may refer survivors to these resources to obtain more information and effectively manage the signs and symptoms of breast cancer and its treatment side effects.

Lymphedema rehabilitation: Provision and practice patterns among service providers: National survey.

Information on the current practices and quantification of lymphedema service may be beneficial to promote and improve the current health care system. Therefore, this study aimed to describe the characteristics of lymphedema practitioners, and lymphedema patients' profiles, and provide a comprehensive picture of lymphedema service provision in Saudi Arabia. A cross-sectional study design used an online survey to gather data. The survey included information about demographic and professional characteristics of lymphedema practitioners, lymphedema profiles, questions on the services provided, and perceived barriers in providing services. Eighteen lymphedema practitioners (38%) responded to the survey. Most of the respondents were physical therapists (94%), who had completed 135 hours of basic training course, and were certified as lymphedema therapists (89%). Most of these practitioners were in Riyadh (58%), Jeddah (25%), and Dammam (17%). About 75% of patients seen by practitioners had secondary lymphedema, predominately breast cancer-related lymphedema (47%). The average number of lymphedema practitioners per service is three. The perceived barriers reported included an inadequate number of certified therapists (100%), difficulties with transportation and lack of financial support (each; 72%), and limited space for lymphedema practice/management (89%). The results suggest lymphedema practitioners provide reasonable services for lymphedema patients; however, services are still limited and needs are unmet. Therefore, more staffing is required to promote awareness of the condition and related services, to develop and implement appropriate educational strategies, and improve geographical and multidisciplinary coordination of the services in Saudi Arabia.

Health-related quality of life outcomes for the LEAP study-CALGB 70305 (Alliance): A lymphedema prevention intervention trial for newly diagnosed breast cancer patients.

BACKGROUND: Lymphedema is an adverse effect of breast cancer treatment that causes swelling and pain in the arm and hand. We tested 2 lymphedema prevention interventions and their impact on health-related quality of life (HRQOL) in a group-randomized trial at 38 cooperative group sites within the United States. METHODS: Patients were recruited before breast surgery. Sites were randomly assigned to education-only (EO) lymphedema prevention or education plus exercise and physical therapy (LEAP). Lymphedema was defined as a ≥10% difference in arm volume at any time from baseline to 18 months postsurgery. HRQOL was assessed using the Functional Assessment of Cancer Therapy-Breast plus 4 lymphedema items (FACT-B+4). Longitudinal mixed model regression analysis, adjusting for key demographic and clinical variables, examined participants' HRQOL by intervention group and lymphedema status. RESULTS: A total of 547 patients (56% LEAP) were enrolled and completed HRQOL assessments. The results revealed no differences between the interventions in preventing lymphedema (P = .37) or HRQOL (FACT-B+4 total score; P = .8777). At 18 months, the presence of lymphedema was associated with HRQOL at borderline significance (P = .0825). However, African American patients reported greater lymphedema symptoms (P = .0002) and better emotional functioning (P = .0335) than patients of other races or ethnicities. Lower HRQOL during the intervention was associated with younger age (P ≤ .0001), Eastern Cooperative Oncology Group performance status >0 (P = .0002), ≥1 positive lymph nodes (P = .0009), having no education beyond high school (P < .0001), having undergone chemotherapy (P = .0242), and having had only axillary node dissection or sentinel node biopsy versus both (P = .0007). CONCLUSION: The tested interventions did not differ in preventing lymphedema or in HRQOL outcomes. African American women reported greater HRQOL impacts due to lymphedema symptoms than women of other races or ethnicities.

A randomized study to prevent lymphedema in women treated for breast cancer: CALGB 70305 (Alliance).

BACKGROUND: Lymphedema affects many women who are treated for breast cancer. We examined the effectiveness of an education-only (EO) versus education plus sleeve compression/exercise intervention (lymphedema education and prevention [LEAP]) on lymphedema incidence and range of motion (ROM) in a group-randomized trial across 38 cooperative group sites. METHODS: The treating institution was randomly assigned to either EO or LEAP by a study statistician. All patients at a treating institution participated in the same intervention (EO or LEAP) to minimize contamination bias. Participants completed surveys, arm volume measurements, and self-reported ROM assessments before surgery and at 12 and 18 months after surgery. Lymphedema was defined as a ≥10% difference in limb volume at any time post-surgery up to 18 months after surgery or diagnosis by a health provider. Cochran-Mantel-Haenszel tests were used to compare lymphedema-free rates between groups, stratified by lymph node surgery type. Self-reported ROM differences were compared between groups. RESULTS: A total of 554 participants (56% LEAP) were included in the analyses. At 18 months, lymphedema-free rates were 58% (EO) versus 55% (LEAP) (P = .37). ROM for both arms was greater in LEAP versus EO at 12 months; by 18 months, most women reported full ROM, regardless of group. In LEAP, only one-third wore a sleeve ≥75% of the time; 50% performed lymphedema exercises at least weekly. CONCLUSION: Lymphedema incidence did not differ by intervention group at 18 months. Poor adherence in the LEAP group may have contributed. However, physical therapy may speed recovery of ROM. Further research is needed to effectively reduce the incidence and severity of lymphedema in patients who have breast cancer.

GOG 244 - The Lymphedema and Gynecologic cancer (LeG) study: The impact of lower-extremity lymphedema on quality of life, psychological adjustment, physical disability, and function.

OBJECTIVE: To assess quality of life (QOL) in patients who developed lower-extremity lymphedema (LLE) after radical gynecologic cancer surgery on prospective clinical trial GOG 244. METHODS: The prospective, national, cooperative group trial GOG-0244 determined the incidence of LLE and risk factors for LLE development, as well as associated impacts on QOL, in newly diagnosed patients undergoing surgery for endometrial, cervical, or vulvar cancer from 6/4/2012-11/17/2014. Patient-reported outcome (PRO) measures of QOL (by the Functional Assessment of Cancer Therapy [FACT]), body image, sexual and vaginal function, limb function, and cancer distress were recorded at baseline (within 14 days before surgery), and at 6, 12, 18, and 24 months after surgery. Assessments of LLE symptoms and disability were completed at the time of lower limb volume measurement. A linear mixed model was applied to examine the association of PROs/QOL with a Gynecologic Cancer Lymphedema Questionnaire (GCLQ) total score incremental change ≥4 (indicative of increased LLE symptoms) from baseline, a formal diagnosis of LLE (per the GCLQ), and limb volume change (LVC) ≥10%. RESULTS: In 768 evaluable patients, those with a GCLQ score change ≥4 from baseline had significantly worse QOL (p < 0.001), body image (p < 0.001), sexual and vaginal function (p < 0.001), limb function (p < 0.001), and cancer distress (p < 0.001). There were no significant differences in sexual activity rates between those with and without LLE symptoms. CONCLUSIONS: LLE is significantly detrimental to QOL, daily function, and body image. Clinical intervention trials to prevent and manage this chronic condition after gynecologic cancer surgery are needed.

Standardization of lower extremity quantitative lymphedema measurements and associated patient-reported outcomes in gynecologic cancers.

Practice changing standardization of lower extremity lymphedema quantitative measurements with integrated patient reported outcomes will likely refine and redefine the optimal risk-reduction strategies to diminish the devastating limb-related dysfunction and morbidity associated with treatment of gynecologic cancers. The National Cancer Institute (NCI), Division of Cancer Prevention brought together a diverse group of cancer treatment, therapy and patient reported outcomes experts to discuss the current state-of-the-science in lymphedema evaluation with the potential goal of incorporating new strategies for optimal evaluation of lymphedema in future developing gynecologic clinical trials.

Associations between religious and spiritual variables and neuroimmune activity in survivors of breast cancer: a feasibility study.

PURPOSE: Chronic stress is associated with neuroimmune inflammation and adverse outcomes in breast cancer survivors. Some breast cancer survivors rely on religious and spiritual (R/S) variables to manage stress after breast cancer treatment. A spiritually based psychoneuroimmunological (PNI) model of health suggests that R/S variables influence neuroimmune activity; however, these associations are not well-established. A pilot study was conducted to assess the feasibility of studying associations between R/S variables and neuroimmune biomarkers in breast cancer survivors. METHOD: Salivary alpha-amylase (sAA) and interleukin-6 (IL-6) were sampled among women previously treated for breast cancer. The primary aim was to assess feasibility and acceptability of the sampling protocol. A secondary aim explored associations between sAA, IL-6, R/S variables, and health outcomes. RESULT: Forty-one women completed the study. Biomarker sampling yielded 246 acceptable specimens used for analysis. SAA was detectable in 96% of specimens and IL-6 was detectable in 44% of specimens. The R/S variables with the strongest associations to sAA were spiritual self-rank (rs = .39; p < .05) and forgiveness (rs = .40; p < .05). The R/S variable with the strongest association to salivary IL-6 was positive congregational support (rs = .42; p < .05). CONCLUSION: Feasibility and acceptability of the sampling protocol were confirmed. Reference ranges for sAA and IL-6 for female breast cancer survivors are presented. Results suggest that spiritual beliefs and religious practices are associated with neuroimmune activity, adding credence to a spiritually based PNI model of health. Findings lay the foundations for future R/S-based interventions to promote health and well-being in breast cancer survivors.

Uncovering Family Treatment Decision-Making Processes: The Value and Application of Case Study Methods to Family Research.

Research on how and why family processes influence phenomena is essential to advancing many areas of science. Case study methods offer an approach that overcomes some of the sampling and analysis obstacles researchers face when studying families. This article aims to illustrate the benefits of case study methods for studying complex family processes using an example from treatment decision-making in sickle cell disease. Using survey, observation, and interview data from various family members within multiple family units, we detail our application of the following analytic strategies: (a) proposition-building, (b) pattern-matching, and (c) cross-case synthesis. Incorporating propositions from a conceptual framework assisted us in study development, data collection, and analysis. Development of graphs and matrices to create thematic family profiles uncovered how and why treatment decision-making occurred as a family process in a pediatric chronic illness. Case study methods are an established, but innovative approach to investigating various phenomena in families.

GOG 244-The lymphedema and gynecologic cancer (LEG) study: Incidence and risk factors in newly diagnosed patients.

OBJECTIVES: To evaluate the incidence and risk factors for lymphedema associated with surgery for gynecologic malignancies on GOG study 244. METHODS: Women undergoing a lymph node dissection for endometrial, cervical, or vulvar cancer were eligible for enrollment. Leg volume was calculated from measurements at 10-cm intervals starting 10 cm above the bottom of the heel to the inguinal crease. Measurements were obtained preoperatively and postoperatively at 4-6 weeks, and at 3-, 6-, 9-, 12-, 18-, and 24- months. Lymphedema was defined as a limb volume change (LVC) ≥10% from baseline and categorized as mild: 10-19% LVC; moderate: 20-40% LVC; or severe: >40% LVC. Risk factors associated with lymphedema were also analyzed. RESULTS: Of 1054 women enrolled on study, 140 were inevaluable due to inadequate measurements or eligibility criteria. This left 734 endometrial, 138 cervical, and 42 vulvar patients evaluable for LVC assessment. Median age was 61 years (range, 28-91) in the endometrial, 44 years (range, 25-83) in the cervical, and 58 years (range, 35-88) in the vulvar group. The incidence of LVC ≥10% was 34% (n = 247), 35% (n = 48), and 43% (n = 18), respectively. The peak incidence of lymphedema was at the 4-6 week assessment. Logistic regression analysis showed a decreased risk with advanced age (p = 0.0467). An exploratory analysis in the endometrial cohort showed an increased risk with a node count >8 (p = 0.033). CONCLUSIONS: For a gynecologic cancer, LVC decreased with age greater than 65, but increased with a lymph node count greater than 8 in the endometrial cohort. There was no association with radiation or other risk factors.

Online couples mindfulness-based intervention for young breast cancer survivors and their partners: A randomized-control trial.

PURPOSE: Young breast cancer survivors (YBCS) face unique challenges in coping with disease, distress, and relationship concerns. The purposes of this study were to understand the acceptability and feasibility of an online Mindfulness-Based Intervention (MBI) for YBCS and their partners (i.e., Couples Mindfulness-Based Intervention: C-MBI) and to compare the effectiveness of the C-MBI to a closely-matched control, an online MBI for individuals (I-MBI). METHODS: YBCS and their partners were recruited. Couples were randomly assigned to an 8-week C-MBI (couples = 41) or to I-MBI (couples = 36), which included one-hour video modules, a manual, and guided-meditation audios. Both couple members participated in the C-MBI; only the YBCS participated in the control I-MBI. Participants answered surveys about individual- and couple-level functioning at baseline and post-intervention. RESULTS: Online delivery was shown to be feasible and acceptable. For YBCS and their partners, levels of perceived stress, anxiety, depression, and fatigue were lower after the intervention, in both conditions. Unexpectedly, however, participating in the C-MBI appeared to have detrimental effects on dyadic adjustment and relationship quality. CONCLUSION: Although YBCS and their partners reported online delivery was acceptable and benefited well-being, for couple-based MBIs to have benefits for relationship functioning, it may be necessary for couples to have the support of other couples and an instructor. Online delivery may be particularly acceptable and effective for clinical populations, including YBCS. Medical professionals may be more likely to recommend online-MBI programs to cancer survivors, because the programs are of little or no cost.

Upper extremity disability and quality of life after breast cancer treatment in the Greater Plains Collaborative clinical research network.

PURPOSE: Chronic upper extremity disability (UED) is common after breast cancer treatment but under-identified and under-treated. Although UED has been linked to quality of life (QoL), the role of UED as mediator between contemporary treatment practices and QoL has not been quantified. This investigation describes UED in a contemporary sample of breast cancer patients and examines its relationship with personal and treatment factors and QoL. METHODS: Eight hundred and thirty-three women diagnosed at eight medical institutions during 2013-2014 with microscopically confirmed ductal carcinoma in situ or invasive stage I-III breast cancer were surveyed an average of 22 months after diagnosis. UED was measured with a modified QuickDASH and QoL with the FACT-B. The questionnaire also collected treatments, sociodemographic information, comorbidity, body mass index, and a 3-item health literacy screener. RESULTS: Women who received post-mastectomy radiation and chemotherapy experienced significantly worse UED and QoL. Women who had lower income, lower health literacy and prior diabetes, arthritis or shoulder diagnoses had worse UED. Patients with worse UED reported significantly worse QoL. Income and health literacy were independently associated with QoL after adjustment for UED but treatment and prior conditions were not, indicating mediation by UED. UED mediated 52-79% of the effect of mastectomy-based treatments on QoL as compared with unilateral mastectomy without radiation. UED and QoL did not differ by type of axillary surgery or post-mastectomy reconstruction. CONCLUSIONS: A large portion of treatment effect on QoL is mediated by UED. Rehabilitation practices that prevent and alleviate UED are likely to improve QoL for breast cancer survivors.

GOG 244 - The LymphEdema and Gynecologic cancer (LEG) study: The association between the gynecologic cancer lymphedema questionnaire (GCLQ) and lymphedema of the lower extremity (LLE).

OBJECTIVE: To explore whether patient-reported lymphedema-related symptoms, as measured by the Gynecologic Cancer Lymphedema Questionnaire (GCLQ), are associated with a patient-reported diagnosis of lymphedema of the lower extremity (LLE) and limb volume change (LVC) in patients who have undergone radical surgery, including lymphadenectomy, for endometrial, cervical, or vulvar cancer on Gynecologic Oncology Group (GOG) study 244. METHODS: Patients completed the baseline and at least one post-surgery GCLQ and LVC assessment. The 20-item GCLQ measures seven symptom clusters-aching, heaviness, infection-related, numbness, physical functioning, general swelling, and limb swelling. LLE was defined as a patient self-reported LLE diagnosis on the GCLQ. LVC was measured by volume calculations based on circumferential measurements. A linear mixed model was fitted for change in symptom cluster scores and GCLQ total score and adjusted for disease sites and assessment time. RESULTS: Of 987 eligible patients, 894 were evaluable (endometrial, 719; cervical, 136; vulvar, 39). Of these, 14% reported an LLE diagnosis (endometrial, 11%; cervical, 18%; vulvar, 38%). Significantly more patients diagnosed versus not diagnosed with LLE reported ≥4-point increase from baseline on the GCLQ total score (p < 0.001). Changes from baseline were significantly larger on all GCLQ symptom cluster scores in patients with LLE compared to those without LLE. An LVC increment of >10% was significantly associated with reported general swelling (p < 0.001), heaviness (p = 0.005), infection-related symptoms (p = 0.002), and physical function (p = 0.006). CONCLUSIONS: Patient-reported symptoms, as measured by the GCLQ, discerned those with and without a patient-reported LLE diagnosis and demonstrated predictive value. The GCLQ combined with LVC may enhance our ability to identify LLE.

Lymphedema symptoms and limb measurement changes in breast cancer survivors treated with neoadjuvant chemotherapy and axillary dissection: results of American College of Surgeons Oncology Group (ACOSOG) Z1071 (Alliance) substudy.

PURPOSE: Lymphedema is a potential complication of breast cancer treatment. This longitudinal substudy aimed to prospectively assess arm measurements and symptoms following neoadjuvant chemotherapy and axillary dissection in the ACOSOG/Alliance Z1071 trial to characterize the optimal approach to define lymphedema. METHODS: Z1071 enrolled patients with cT0-4, N1-2, M0 disease treated with neoadjuvant chemotherapy. All patients underwent axillary dissection. Bilateral limb volumes, circumferences, and related symptoms were assessed pre-surgery, 1-2 weeks post-surgery, and semiannually for 36 months. Lymphedema definitions included volume increase ≥ 10% or limb circumference increase ≥ 2 cm. Symptoms were assessed by the Lymphedema Breast Cancer Questionnaire. RESULTS: In 488 evaluable patients, lymphedema incidence at 3 years by ≥ 10%-volume-increase was 60.3% (95% CI 55.0-66.2%) and by ≥ 2 cm-circumference increase was 75.4% (95% CI 70.8-80.2%). Symptoms of arm swelling and heaviness decreased from post-surgery for the first 18 months and then were relatively stable. The 3-year cumulative incidence of arm swelling and heaviness was 26.0% (95% CI 21.7-31.1%) and 30.9% (95% CI 26.3-36.3%), respectively. There was limited agreement between the two measurements (kappa 0.27) and between symptoms and measurements (kappa coefficients ranging from 0.05-0.09). CONCLUSIONS: Lymphedema incidence by limb volume and circumference gradually increased over 36 months post-surgery, whereas lymphedema symptoms were much lower. These findings underscore the importance of prospective surveillance and evaluation of both limb measurements and symptom assessment. Lymphedema incidence rates varied by definition. We recommend that ≥ 10% volume change criterion be used for lymphedema evaluation for referral for specialist care. TRIAL REGISTRATION: NCT00881361.

Treatment Documentation in Practice-Based Evidence Research for Patients Receiving Physical Therapy Because of Lymphedema.

OBJECTIVES: To describe development and testing of a physical therapy treatment code documentation taxonomy. DESIGN: Clinician survey within a practice-based evidence study framework for patients with lymphedema. SETTING: Outpatient physical therapy clinics within a large public health care service using a central electronic medical record. PARTICIPANTS: Certified lymphedema therapists (CLTs) (N=43). INTERVENTION: Treatment coding of 10 treatment vignettes representing real-life clinical scenarios. The CLTs were asked to accurately select 35 activity-intervention combination codes. MAIN OUTCOME MEASURES: The CLT score represented percentage of treatment codes accurately selected by each therapist. The code score represented percentage of CLTs who accurately selected each treatment code. RESULTS: The mean CLT score was 91%, with 72% of CLTs meeting the 90% criterion. Personal feedback was provided to each CLT. The mean code score was also 91%; with 71% of treatment codes meeting the 90% criterion. We identified 9 low-score codes needing additional education or found to be redundant. These codes were either clarified or removed. CONCLUSIONS: The proposed treatment code documentation system for lymphedema therapy was found to be clear and accurately used by most CLTs. Specific needs for improvement were identified. Follow-up testing is warranted to ensure ongoing accurate implementation of the treatment documentation system.

Decision making in pediatric hematopoietic cell transplantation: Influential factors vary among diseases.

Hematopoietic cell transplantation (HCT) is not a trivial treatment decision in pediatrics. We sought to understand what influences this decision-making process from the perspectives of the pediatric patients, their family, and physicians. Using integrative review methods, we identified 19 relevant studies: six qualitative, ten quantitative, and three mixed methods. Synthesis of the results revealed six themes describing patient, family, and provider decision-making processes with distinct subthemes contrasting influential factors among malignant and nonmalignant diseases. Identification of what influences HCT decision making will aid in development of decision support, education, and communication strategies. The child/adolescent voice and provider perspective warrant more attention.