Subjective Cognition is Related to Patient-Reported Symptom Distress and Work Productivity Among Liver Transplant Recipients.

Cognitive decline may prevent liver transplant (LT) recipients from staying healthy and independent. This study examined associations of objective and subjective, rated by LT recipients and caregivers, cognitive decline with patient-reported physical and psychological symptom distress, ability to perform household tasks, and workplace productivity among LT recipients. Sixty pairs of LT recipients and caregivers participated in this cross-sectional study. Subjective cognition was measured by the Everyday Cognition. Objective cognition was assessed with four cognitive tests, including the Repeatable Battery for the Assessment of Neuropsychological Status. Patient-reported outcomes were assessed with the Rotterdam Symptom Checklist-Modified, Profile of Mood States-Short Form, Creative Therapy Consultants Homemaking Assessment, and Work Limitations Questionnaire. Linear regression analyses related objective and subjective cognition to the patient-reported outcomes. While objective cognitive decline was not associated with any patient-reported outcomes, subjective cognitive decline was significantly associated with the outcomes. Higher LT recipient self-rated cognitive decline was associated with higher physical symptom distress ( ß = 0.30, p = 0.006) and workplace productivity loss ( ß = 14.85, p < 0.0001). Higher caregiver-rated cognitive decline was associated with lower household tasks performance ( ß = -18.55, p = 0.015). Findings suggest to consider subjective cognition when developing an individualized post-transplant care plan.

Qualitative similarities and distinctions between participants' experiences with a yoga intervention and an attention control.

PURPOSE: This manuscript aims to compare and contrast acceptability and perceived benefits of yoga-skills training (YST) and an empathic listening attention control (AC) in the Pro-You study, a randomized pilot trial of YST vs. AC for adults receiving chemotherapy infusions for gastrointestinal cancer. METHODS: Participants were invited for a one-on-one interview at week 14 follow-up, after completing all intervention procedures and quantitative assessments. Staff used a semi-structured guide to elicit participants' views on study processes, the intervention they received, and its effects. Qualitative data analysis followed an inductive/deductive approach, inductively identifying themes and deductively guided by social cognitive theory. RESULTS: Some barriers (e.g., competing demands, symptoms), facilitators (e.g., interventionist support, the convenience of clinic-based delivery), and benefits (e.g., decreased distress and rumination) were common across groups. YST participants uniquely described the importance of privacy, social support, and self-efficacy for increasing engagement in yoga. Benefits specific to YST included positive emotions and greater improvement in fatigue and other physical symptoms. Both groups described some self-regulatory processes, but through different mechanisms: self-monitoring in AC and the mind-body connection in YST. CONCLUSIONS: This qualitative analysis demonstrates that participant experiences in a yoga-based intervention or an AC condition reflect social cognitive and mind-body frameworks of self-regulation. Findings can be used to develop yoga interventions that maximize acceptability and effectiveness and to design future research that elucidates the mechanisms by which yoga is efficacious.

Development and preliminary validation of a health-related family quality of life instrument.

The researchers' aims for this preliminary study was to develop an instrument, guided by the Theory of Health-related Family Quality of Life, to measure health-related family quality of life (HR-FQoL) as perceived by women with cancer. The researchers used a two phase design for instrument development: (1) establishing face validity of a 38-item instrument with an expert panel and patient review, and (2) focusing on the internal structure and construct validity of the instrument with responses from female patients (N = 236) with a cancer diagnosis (breast, gynecologic). The researchers identified a final 25-item HR-FQoL instrument with four sub-scales that each captured multiple concepts within the Theory of HR-FQoL. The resulting instrument maybe used by researchers and clinicians to assess various aspects of health-related family quality of life among female breast and gynecological cancer survivors.

Risk factors for breast cancer-related lymphedema in patients undergoing 3 years of prospective surveillance with intervention.

BACKGROUND: To evaluate risk factors (treatment-related, comorbidities, and lifestyle) for breast cancer-related lymphedema (BCRL) within the context of a Prospective Surveillance and Early Intervention (PSEI) model of care for subclinical BCRL. METHODS: The parent randomized clinical trial assigned patients newly diagnosed with breast cancer to PSEI with either bioimpedance spectroscopy (BIS) or tape measurement (TM). Surgical, systemic and radiation treatments, comorbidities, and lifestyle factors were recorded. Detection of subclinical BCRL (change from baseline of either BIS L-Dex ≥6.5 or tape volume ≥ 5% and < 10%) triggered an intervention with compression therapy. Volume change from baseline ≥10% indicated progression to chronic lymphedema and need for complex decongestive physiotherapy. In this secondary analysis, multinomial logistic regressions including main and interaction effects of the study group and risk factors were used to test for factor associations with outcomes (no lymphedema, subclinical lymphedema, progression to chronic lymphedema after intervention, progression to chronic lymphedema without intervention). Post hoc tests of significant interaction effects were conducted using Bonferroni-corrected alphas of .008; otherwise, an alpha of .05 was used for statistical significance. RESULTS: The sample (n = 918; TM = 457; BIS = 461) was female with a median age of 58.4 years. Factors associated with BCRL risk included axillary lymph node dissection (ALND) (p < .001), taxane-based chemotherapy (p < .001), regional nodal irradiation (RNI) (p ≤ .001), body mass index >30 (p = .002), and rurality (p = .037). Mastectomy, age, hypertension, diabetes, seroma, smoking, and air travel were not associated with BCRL risk. CONCLUSIONS: Within the context of 3 years of PSEI for subclinical lymphedema, variables of ALND, taxane-based chemotherapy, RNI, body mass index >30, and rurality increased risk.

Subjective Cognition Reported by Caregivers Is Correlated With Objective Cognition in Liver Transplant Recipients.

Objective cognitive assessments, a gold standard diagnostic tool for cognitive impairment, may not be feasible in busy liver transplantation (LT) practice because they are often time consuming. This study determined whether subjective cognition, patients' self-ratings and/or caregivers' ratings of patients' cognition, reflects objective cognition in LT recipients. A convenience sample of 60 adult LT recipients and their caregivers, recruited at a single transplant center, participated in this cross-sectional descriptive study. Subjective cognition (ie, recipient self-rated and caregiver rated) was measured using the Everyday Cognition (ECog; global and 6 domain scores). Objective global and domain-specific cognition of recipients was measured using the Repeatable Battery for the Assessment of Neuropsychological Status (RBANS), Trail Making Test parts A and B, Digit Span Backward, and Rey-Osterrieth Complex Figure. Agreement between LT recipients' ECog scores and those of their caregivers was fair to moderate (intraclass correlation coefficient = 0.48 for global score, 0.35-0.56 for domain scores). Significant, albeit rather weak, correlations were found between subjective and objective scores. Recipients' ECog visuospatial abilities scores were correlated with Rey-Osterrieth Complex Figure scores (rs  = -0.39; P = 0.007), whereas caregivers' ECog global, attention, visuospatial abilities, and organization scores were, respectively, correlated with the scores of RBANS global (rs  = -0.33; P = 0.04) and attention (rs  = -0.46; P = 0.005), Rey-Osterrieth Complex Figure (Copy; rs  = -0.34; P = 0.03), and Trail Making Test part A (rs  = 0.31; P = 0.049). The findings suggest that caregivers may estimate LT recipients' cognition better than recipients themselves. Caregivers may provide supplemental information that could be useful for clinicians when considering the cognitive functioning of LT recipients.

Measuring Functional Status in Huntington's Disease.

BACKGROUND: Neuropsychiatric and cognitive symptoms account for substantial morbidity in Huntington's disease (HD), but their impact on functional status may not be captured using the Total Functional Capacity (TFC) scale. The objective of this study was to assess the impact of motor, cognitive, and neuropsychiatric symptoms on functional status in persons with HD, comparing two instruments. METHODS: Multiple regression analyses assessed the relationship between neuropsychiatric, cognitive, and motor symptoms and functional status as measured using TFC and Adult Functional Adaptive Behavior (AFAB) scales. RESULTS: Greater burden of neuropsychiatric (P = 0.017), cognitive (P = 0.001), and motor (P = 0.001) symptoms was associated with greater impairments to functional status as measured by the AFAB scale. Only motor symptoms were associated with TFC scores (P = 0.002). The 3 symptom domains explained more of the variance in AFAB than TFC scores (P = 0.016). CONCLUSIONS: TFC may have limited applicability, particularly in early-stage HD patients, as a measure of functional status. The AFAB scale can be used in HD studies as a more holistic measure of functional status. © 2020 International Parkinson and Movement Disorder Society.

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.

Advanced pneumatic compression for treatment of lymphedema of the head and neck: a randomized wait-list controlled trial.

PURPOSE: Lymphedema associated with head and neck cancer (HNC) therapy causes adverse clinical outcomes. Standard treatment includes professionally administered complete decongestive therapy (CDT). Cost and availability of trained therapists are known barriers to therapy. Advanced pneumatic compression devices (APCD) may address these issues. A randomized, wait-list controlled trial was undertaken to evaluate an APCD in post-treatment HNC patients with lymphedema. MATERIAL AND METHODS: Eligible patients had completed treatment for HNC, were disease free, and had lymphedema at enrollment. Participants were randomized to wait-list lymphedema self-management (standard of care) or lymphedema self-management plus the use of the APCD bid. Safety (CTCAE V4.0) and feasibility were primary endpoints; secondary endpoints included efficacy measure by objective examination and patient reported outcomes (symptoms, quality of life, function), adherence barriers, and satisfaction. Assessments were conducted at baseline and weeks 4 and 8. RESULTS: Forty-nine patients were enrolled (wait-list n = 25; intervention n = 24). In total, forty-three patients completed the study. No device-related Serious Adverse Events were reported. Most patients used the APCD once per day, instead of the prescribed twice per day, citing time related factors as barriers to use. APCD use was associated with significant improvement in perceived ability to control lymphedema (p = 0.003) and visible external swelling (front view p < 0.001, right view p = 0.004, left p = 0.005), as well as less reported pain. CONCLUSION: This trial supports the safety and feasibility of the APCD for the treatment of secondary lymphedema in head and neck cancer patients. In addition, preliminary data supports efficacy.

A qualitative examination of patient priorities and preferences during treatment decision-making for recurrent head and neck cancer.

PURPOSE: Patients with recurrent head and neck cancer (HNC) may feel overwhelmed at the prospect of having to consider treatment options particularly if they recently completed treatment for their primary disease or when they have no options that may lead to long-term survival. The purpose of this study was to examine patient priorities and preferences during treatment decision-making for recurrent HNC. METHODS: Individuals with newly diagnosed recurrent HNC were recruited at a National Cancer Institute-Designated Cancer Center. Participants were interviewed using a structured interview guide. Descriptive statistics were used to describe participants, and qualitative template analysis was used to analyze interview data. RESULTS: Participants (n = 38) considered information from healthcare providers, likelihood of treatment success, and other patient-specific factors in making their treatment decisions. CONCLUSIONS: Although patients with recurrent HNC endorse a myriad of decision-making factors, the recommendation of their healthcare provider and the likelihood of treatment success are of paramount importance. Future research should focus on methods to rapidly identify patient priorities at the time of diagnosed recurrence while respecting patient coping and communication styles.

Implementing a prospective surveillance and early intervention model of care for breast cancer-related lymphedema into clinical practice: application of the RE-AIM framework.

PURPOSE: Chronic lymphedema following breast cancer (BC) affects individuals physically, functionally, psychologically, and financially. Despite national guidelines and evidence-based research supporting a prospective surveillance and early intervention model of care (PSM), bridging the gap between research and clinical practice has been difficult. METHOD: As part of an international randomized controlled trial (RCT), Australian women with BC from four hospitals were recruited, monitored for lymphedema at regular intervals over a 3-year period, and were provided a compression garment if intervention was triggered. The reach, effectiveness, adoption, implementation and maintenance (RE-AIM) evaluation framework was used retrospectively to assess a PSM at the individual and organizational level for those who had completed at least 2-year follow-up (N = 219) in the RCT. RESULTS: The application of the RE-AIM framework retrospectively demonstrated an extensive reach to patients across public and private settings; the effectiveness of prospective surveillance and early intervention was achieved through low progression rates to clinical lymphedema (1.8%), and all hospital sites initially approached adopted the research study. Key implementation strategies necessary for effectiveness of this model of care included education to health professionals and patients, staff acceptability, and development of a referral and care pathway. Maintenance dimensions were evaluated both at the individual level with 92-100% adherence rates for all nonoptional study appointments over the 2-year period, and at the organizational-level, PSM was sustained after recruitment ceased for the research study. CONCLUSION: The PSM for lymphedema in BC can be successfully implemented using the RE-AIM framework applied retrospectively. The implementation of the PSM used in the RCT has assisted in changing clinical practices and improving the quality and effectiveness of the health care system.

Health-Care Professionals Perceived Barriers to Effective Cancer Pain Management in the Home Hospice Setting: Is Dying at Home Really Best?

Hospice health-care professionals (HCP) evaluate and manage cancer pain in patient homes. This study explores HCP's perceptions of barriers that affect pain management for home hospice cancer patients. A convenience sample of 20 experienced hospice HCP were recruited from a regional hospice agency. Data were collected through two focus groups using semistructured interviews and analyzed using a constant comparative approach to generate themes. An unexpected finding revealed patient's religious and cultural beliefs about suffering and family caregiver's beliefs that patients deserve to suffer due to past actions are barriers to pain management in home hospice. Hospice HCP can identify patients at risk for suffering at the end of life. Interventions targeting spiritual suffering and needs are needed. Home hospice HCP have an ethical obligation to address undue suffering through family's withholding of necessary pain medications and should consider alternative placement when home is not suitable for a peaceful death.

Improved Parent-Child Communication following a RCT Evaluating a Legacy Intervention for Children with Advanced Cancer.

Although legacy-building is a priority for quality palliative care, research has rarely examined effects of legacy interventions in children, particularly their impact on parent-child communication.We examined the impact of a web-based legacy intervention on parent-child communication. We hypothesized that compared to usual care, legacy-making would improve quality of parent-child communication.Between 2015 and 2018, Facebook advertisements were used to recruit families of children (ages 7-17) with relapsed/refractory cancer. Parent-child dyads were randomly assigned to the intervention or usual care group. The intervention website guided children to create digital storyboards over 2 weeks by directing them to answer legacy questions about themselves and upload photographs, videos, and music. Families received a copy of the child's final digital story. Children and parents completed the Parent-Adolescent Communication Scale pre- (T1) and post-intervention (T2). Linear regressions tested for differences in change from T1 to T2 between the groups controlling for T1 values using an alpha of p < .05. Intervention effects were measured using Cohen's d. Ninety-seven parent-child dyads were included for analysis. Changes in parent-child communication were not statistically significantly different between the groups, yet meaningful intervention effects were observed. The strongest effects were observed for improving father-child communication (Cohen's d = -0.22-0.33). Legacy-making shows promise to facilitate improved parent-child communication, particularly for fathers. Future studies should include fathers and measure expression of feelings and parent-child interaction. Providers should continue to facilitate family communication for children with advanced disease and realize that legacy interventions may impact mother-child versus father-child communication differently.

A Systematic Review of Neuropsychiatric Symptoms and Functional Capacity in Huntington's Disease.

OBJECTIVE: Neuropsychiatric symptoms are known to increase caregiver burden and decrease patient quality of life among patients with Huntington's disease. Functional capacity is an outcome commonly used in Huntington's disease clinical trials to quantify disease progression or intervention response. Some studies have examined the relationship between neuropsychiatric symptoms and functional capacity; however, this evidence has not been synthesized. The authors reviewed existing evidence on the association between neuropsychiatric symptoms and functional capacity in Huntington's disease. METHODS: A systematic review was conducted using PubMed and CINAHL. Articles were included if they described primary research in humans with Huntington's disease, measured one or more neuropsychiatric symptoms and functional capacity, and reported statistical methods to identify associations between the two concepts. Additional eligible articles were identified through reference mining and review of other relevant literature. RESULTS: Fourteen articles were eligible for review. Neuropsychiatric symptoms were measured individually, in clusters (i.e., depression, anxiety, and suicide items contributing to a depression cluster score), or with an overall score. Significant associations with decreased functional capacity were found most commonly with depression (N=7, median r=0.48) and apathy (N=5, median r=0.47). Other neuropsychiatric symptoms, clusters, and overall scores were all associated with functional capacity in three or fewer studies. CONCLUSIONS: There is some evidence that depression and apathy are associated with decreased functional capacity in Huntington's disease. Other neuropsychiatric symptoms have been infrequently examined. Further knowledge of the relationships between neuropsychiatric symptoms and functional capacity will identify areas for intervention and improvement of outcomes in patients with Huntington's disease.

Development and testing of a frailty-focused communication (FCOM) aid for older adults.

The concept of frailty as it pertains to aging, health and well-being is poorly understood by older adults and the public-at-large. We developed an aging and frailty education tool designed to improve layperson understanding of frailty and promote behavior change to prevent and/or delay frailty. We subsequently tested the education tool among adults who attended education sessions at 16 community sites. Specific aims were to: 1) determine acceptability (likeability, understandability) of content, and 2) assess the likelihood of behavior change after exposure to education tool content. Results: Over 90% of participants "liked" or "loved" the content and found it understandable. Eighty-five percent of participants indicated that the content triggered a desire to "probably" or "definitely" change behavior. The desire to change was particularly motivated by information about aging, frailty and energy production. Eight focus areas for proactive planning were rated as important or extremely important by over 90% of participants.

A Randomized Trial Evaluating Bioimpedance Spectroscopy Versus Tape Measurement for the Prevention of Lymphedema Following Treatment for Breast Cancer: Interim Analysis.

BACKGROUND: Breast cancer-related lymphedema (BCRL) represents a major source of morbidity among breast cancer survivors. Increasing data support early detection of subclinical BCRL followed by early intervention. A randomized controlled trial is being conducted comparing lymphedema progression rates using volume measurements calculated from the circumference using a tape measure (TM) or bioimpedance spectroscopy (BIS). METHODS: Patients were enrolled and randomized to either TM or BIS surveillance. Patients requiring early intervention were prescribed a compression sleeve and gauntlet for 4 weeks and then re-evaluated. The primary endpoint of the trial was the rate of progression to clinical lymphedema requiring complex decongestive physiotherapy (CDP), with progression defined as a TM volume change in the at-risk arm ≥ 10% above the presurgical baseline. This prespecified interim analysis was performed when at least 500 trial participants had ≥ 12 months of follow-up. RESULTS: A total of 508 patients were included in this analysis, with 109 (21.9%) patients triggering prethreshold interventions. Compared with TM, BIS had a lower rate of trigger (15.8% vs. 28.5%, p < 0.001) and longer times to trigger (9.5 vs. 2.8 months, p = 0.002). Twelve triggering patients progressed to CDP (10 in the TM group [14.7%] and 2 in the BIS group [4.9%]), representing a 67% relative reduction and a 9.8% absolute reduction (p = 0.130). CONCLUSIONS: Interim results demonstrated that post-treatment surveillance with BIS reduced the absolute rates of progression of BCRL requiring CDP by approximately 10%, a clinically meaningful improvement. These results support the concept of post-treatment surveillance with BIS to detect subclinical BCRL and initiate early intervention.

Late systemic symptoms in head and neck cancer survivors.

PURPOSE: Neuroinflammation and central sensitization from cancer and its therapy may result in chronic systemic symptoms (CSS) such as fatigue, sleep disturbance, chronic widespread pain, mood disorders, neuropsychiatric symptoms, and temperature dysregulation. We undertook a cross-sectional study of CSS in head and neck cancer (HNC) survivors to determine their frequency, severity, and impact. METHODS: HNC patients without evidence of recurrence who were at least 12 months post-treatment completed a one-time battery of self-report measures including the Vanderbilt Head and Neck Symptom survey plus the General Symptom Subscale, the Body Image Quality of Life Inventory, Neurotoxicity Rating Scale, the Profile of Mood States, and a five-item quality of life measure. RESULTS: One hundred five patients completed the surveys. Forty-eight point four percent of patients experienced one or more moderate-to-severe systemic symptom. The frequency of individual symptoms was between 20% and 56% with almost half of patients rating symptoms as moderate-to-severe in intensity. Low and high systemic symptom burden populations were identified. Previously undescribed chronic neuropsychiatric symptoms were also found to be frequent and severe. The vigor score on the POMS was low. Body image was not adversely impacted. At least 40% of HNC survivors have diminished quality of life, and up to 15% have a poor quality of life. CONCLUSIONS: CSS are common among HNC survivors and are frequently moderate to severe in intensity. Of note, previously underrecognized neuropsychiatric symptoms were endorsed by a significant cohort of patients warranting further study. Quality of life was diminished in a significant cohort.

Breast cancer survivors' perspectives of critical lymphedema self-care support needs.

PURPOSE: To solicit breast cancer survivors' perspectives on the variety of issues they face related to lymphedema self-care and identify support needs perceived as critical for managing their chronic medical condition. METHODS: Twenty-one breast cancer survivors with lymphedema participated in audio-recorded focus groups about barriers and facilitators of self-care. Transcripts were analyzed using ATLAS.ti software by two coders. Triangulation of findings provided for refinement and category confirmation. RESULTS: Themes identified included lack of social support, lack of resources for self-care activities, and self-advocacy by default. Lack of social support subthemes were feeling misunderstood, minimization of needs, and feeling criticized. Lack of resources for self-care activities subthemes were lack of both tangible self-care support and self-care supplies. Self-advocacy by default subthemes were the need to proactively manage lymphedema complications, the need to educate health-care workers, and feeling marginalized by the health-care system. CONCLUSIONS: Lack of support and the failure of others to recognize lymphedema as a chronic condition set this patient population apart from other patients with chronic diseases and decreases the amount of help needed to manage the condition.

Differences of symptoms in head and neck cancer patients with and without lymphedema.

PURPOSE: Head and neck cancer (HNC) patients are at risk for developing external and internal lymphedema. Currently, no documentation of symptom differences between individuals with and without head and neck lymphedema is available. The purpose of this analysis was to examine symptom differences among HNC patients with and without lymphedema. METHODS: Data were drawn from three cross-sectional studies of HNC patients >3 months post-cancer treatment (total N = 163; 128 patients with lymphedema, 35 without lymphedema). External lymphedema was evaluated via physical examination; internal lymphedema was identified through endoscopic examination. Participant's head and neck lymphedema status was categorized into two groups: no indication of external or internal lymphedema and at least some indication of external or internal lymphedema. Lymphedema Symptom Intensity and Distress Survey-Head and Neck (LSIDS-H&N) was used to assess symptom burden. Descriptive statistics, McNemar, chi-squared, Wilcoxon signed-ranks, and Mann-Whitney tests were used. RESULTS: Twenty-three pairs of patients were identified and matched on the age, primary tumor site, tumor stage, and time since end of cancer treatment. Relative to patients without lymphedema, matched patients with lymphedema reported either increased symptom prevalence or severity or distress level for the following symptoms (prevalence differences of at least 15 % between the matched groups and p < 0.05): (1) numbness; (2) tightness; (3) heaviness; (4) warmth; (5) pain without head/neck movement; (6) problems swallowing mashed or pureed foods; (7) trouble breathing; (8) blurred vision; (9) feel worse when flying in an airplane; and (10) swelling. CONCLUSIONS: Findings suggest that HNC-related lymphedema may be associated with substantial symptom burden. Studies with larger sample sizes are needed to replicate the findings.

Sense of Belonging and Hope in the Lives of Persons with Schizophrenia.

This qualitative study used semi-structured interviews to explore the meaning of sense of belonging and hope in the lived experiences of 20 persons with chronic schizophrenia-spectrum disorders receiving acute inpatient treatment. Experience of treatment was also explored. Sense of belonging and hope were both identified as valuable or even vital, yet the experiences of not belonging and/or feeling hopeless was more prevalent. Participants frequently felt like an outsider and experienced loneliness and isolation, suggesting a need for further exploration of the impact of sense of belonging and hope on recovery and even treatment adherence in persons with schizophrenia.

Development and validation of the Lymphedema Symptom and Intensity Survey-Arm.

PURPOSE: The purpose of this instrument development project was to create a self-report tool to evaluate arm lymphedema and associated symptoms in breast cancer survivors. METHODS: The Lymphedema Symptom Intensity and Distress Survey-Arm (LSIDS-A) was developed and tested in three phases: phase 1-literature review and expert panel; phase 2-preliminary validation; and phase 3-final validation. RESULTS: Phase 1: The most common symptoms experienced by breast cancer survivors with lymphedema were identified. A 52-item scale was developed. Phase 2: 128 community-dwelling breast cancer survivors (64 with lymphedema, 64 without lymphedema) completed the LSIDS-A. Feedback from the participants was that the format was "clear" and "made sense"; therefore, the response structure was left intact. Sixteen items were deleted leaving a 36-item revised instrument. Phase 3: Subsequent testing in a total sample of 236 breast cancer survivors with lymphedema was undertaken. The Cronbach's alpha reliability values for the overall intensity and distress scores were 0.93 and 0.94, respectively. The Kuder-Richardson values ranged from 0.66 to 0.92. Divergent validity evaluated against Marlowe-Crowne Social Desirebility Scale overall was acceptable (intensity, r s = 0.08; distress, r s = -0.12). Convergent validity was acceptable as tested with multiple instruments (e.g., Functional Assessment of Cancer Therapy-Breast +4, overall intensity r s = -0.44, overall distress r s = -.48) CONCLUSIONS: The 30-item LSIDS-A is a valid and reliable instrument that can be used to assess arm lymphedema and its associated symptoms.