Yost, Kathleen J.

236 Background: Patients (pts) with aggressive lymphoma are generally treated with curative intent and many become long-term survivors. There is little data on health behaviors after lymphoma diagnosis and their effect on QOL and long-term outcomes. Methods: Lymphoma pts were prospectively enrolled within 9 months of diagnosis in the University of Iowa/Mayo Clinic SPORE Molecular Epidemiology Resource (MER) and systematically followed. We measured QOL (FACT-G) and health behaviors (tobacco/alcohol use; diet/exercise habits) 3 years after diagnosis. For this study, “survivor” was defined as alive at 3 years from diagnosis with no active disease or treatment within the previous year. Results: From 2002-2012, 671 patients with aggressive lymphoma were enrolled, met survivor definition, and completed 3-year QOL and health behavior questionnaires. At 3-years, 31% of female (F) and 48% of male (M) reported a history of tobacco use for 6+ months. Of these, 13% of F and 7% of M were still smoking; 52% reported decreased use from baseline. 66% reported no change in alcohol intake at 3-years while 25% of F and 34% of M reported decreased intake. 60% often chose whole grains and 65% get 2+ servings of vegetables daily. 42% of F and 38% of M “somewhat” believed diet could change the course of their lymphoma. Most pts endorsed no significant change in diet as a result of diagnosis. Those who made changes did so primarily out of concern for “health problems other than cancer”. Overweight/obese responders were 72% pre- and 66% post-treatment. A desire to lose weight was reported by 55% of pts. 14% of F and 23% of M often engaged in regular physical activity (PA). Nearly 50% reported a decrease in PA. Pts with advanced stage (p = 0.006), age > 60 (p = 0.001), ECOG PS > 2 (p = 0.04), and worse prognostic score (p = 0.006) were more likely to report decreased PA since diagnosis. 68% of F and 61% of M intend to become more active in the next months. Regular PA (p = < 0.0001) was associated with higher QOL, while increased alcohol intake was associated with lower QOL (p = 0.009) at 3 years. Conclusions: Many survivors of aggressive NHL strive to adopt healthy behaviors and these behaviors are associated with higher QOL. Interventions aimed at emphasizing these behaviors may have potential to improve long-term outcomes and QOL.

Purpose: The authors designed a community-based participatory research study to develop and test a family-based behavioral intervention to improve cancer literacy and promote mammography among Navajo women. Method: Using data from focus groups and discussions with a community advisory committee, they adapted an existing questionnaire to assess cancer knowledge, barriers to mammography, and cancer beliefs for use among Navajo women. Questions measuring health literacy, numeracy, self-efficacy, cancer communication, and family support were also adapted. Results: The resulting questionnaire was found to have good content validity, and to be culturally and linguistically appropriate for use among Navajo women. Conclusions: It is important to consider culture and not just language when adapting existing measures for use with AI/AN (American Indian/Alaskan Native) populations. English-language versions of existing literacy measures may not be culturally appropriate for AI/AN populations, which could lead to a lack of semantic, technical, idiomatic, and conceptual equivalence, resulting in misinterpretation of study outcomes.

ObjectiveSeveral studies have demonstrated small but statistically significant differences in quality‐of‐life (QOL) scores among vestibular schwannoma (VS) treatment modalities. However, does a several‐point difference on a 100‐point scale really matter? The minimal clinically important difference (MCID)—defined as the smallest difference in scores that patients perceive as important and that could lead to a change in management—was developed to answer this important question. While the MCID has been determined for QOL measures used in other diseases, it remains undefined in the VS literature.Study DesignDistribution‐ and anchor‐based techniques were utilized to define the MCID for the Penn Acoustic Neuroma Quality of Life (PANQOL) and 36‐Item Short Form Health Survey (SF‐36).SettingTwo academic referral centers.PatientsPatients with VS (N = 538).InterventionCross‐sectional postal survey.Main Outcome MeasuresMCID for PANQOL domains and total score and SF‐36 Physical and Mental Health Component Summary scores.ResultsThe MCID (median, interquartile range) for the PANQOL total score was 11 points (10‐12); the MCIDs for individual domains were as follows: hearing, 6 (5‐8); balance, 16 (14‐19); facial, 10 (no interquartile range); pain, 11 (10‐13); energy, 13 (10‐17); anxiety, 11 (5‐22); and general, 15 (11‐19). The MCID was 7 points (6‐11) for the SF‐36 Mental Health Component Summary score and 8 points (6‐10) for the Physical Health Component Summary score.ConclusionsThe MCIDs determined in the current study generally exceed differences reported in previous prospective studies, in which conclusions about QOL benefit (or harm) among VS treatment modalities were based on statistical significance alone. Moving forward, these MCIDs should be considered when interpreting results of VS QOL studies.

BackgroundCommunication failures between clinicians and dermatopathologists are prevalent. Our primary objective was to characterize the concerns and challenges of dermatopathologists posed by incomplete or inaccurate clinical information in the skin biopsy requisition form.MethodsAn explanatory sequential, mixed‐methods study design comprised of a survey sent to 1103 members of the American Society of Dermatopathology (ASDP), followed by two focus group sessions.ResultsA total of 54% (598/1103) of dermatopathologists completed the questionnaire. Most dermatopathologists (80%; 436/548) viewed their roles to be providers of histopathological diagnosis and a report that is clinically meaningful. Paper or electronic requisition forms were the most common communication method (85%; 458/541) and were associated with the highest rates of dissatisfaction in 36% (193/537) of respondents. Inadequacy of specimens emerged as an important factor influencing judgment of the quality of provided clinical information. 44.7% (261/584) of dermatopathologists spent 30 minutes or more on average every day searching for relevant clinical information to assist with their histopathologic interpretation.ConclusionASDP dermatopathologists expressed significant dissatisfaction with the quality of clinical information in the requisition form and the time spent gathering information necessary for accurate, timely and clinically meaningful diagnosis. These findings have implications for the quality, safety and efficiency of dermatologic care.

AbstractBackgroundShared decision making is promoted to improve cancer care quality. Patients and clinicians may have different ideas about what constitutes a cancer care decision, which may limit the validity of self‐reported measures of shared decision making. We sought to estimate the extent to which patients and clinicians agree on whether a cancer care decision was made during an outpatient encounter.MethodsWe surveyed patients and clinicians immediately after an oncology encounter at a large, tertiary medical centre and calculated agreement in response to the single‐item question, ‘Was a specific decision about cancer care made during the appointment today?’ Answer options were ‘yes’ and ‘no’. Participants were 315 oncology patients, with any solid tumour malignancy and at any stage of management, and their clinicians (22 staff oncologists, nine senior fellows and five nurse practitioners).ResultsPatients and clinicians reported having made a cancer care decision in 184 (58%) and 174 (55%) of encounters, respectively. They agreed on whether a cancer care decision was made in 213 (68%) of encounters (chance‐adjusted agreement was 0.34); in 56 of the 102 discordant encounters, the patient reported making a decision while the clinician did not. We found no significant correlates with discordance.ConclusionsPatients and clinicians do not always agree on whether a cancer care decision was made. As such, measures that ask patients and/or clinicians to evaluate a decision‐making process or outcome may be methodologically insufficient when they do not explicitly orient respondents towards the thing they are being asked to assess.

Background Patient-reported signs and symptoms are often the first indication of clinically relevant lymphedema. Objective The purpose of this study was to develop and assess the diagnostic accuracy of a screening questionnaire to detect lower-extremity lymphedema (LEL) among normal-weight women and women with obesity. Design This was a cross-sectional survey study. Methods The authors reviewed existing questionnaires assessing upper-extremity lymphedema (UEL) for potential questions and worked with content experts to generate new items. A draft questionnaire with 59 items was reviewed by 5 physicians and 5 physical therapists who specialized in lymphedema management and 5 female patients with clinically confirmed secondary LEL. A revised questionnaire with 45 items was administered by mail to 186 women with clinically confirmed LEL (n=116) or UEL (n=70). A total of 99 women (53.2% of 186) completed the mailed survey, and 28 women with lymphedema who were recruited directly in a lymphedema clinic waiting area also completed the survey. A parsimonious subset of items that best discriminated patients with and without LEL was identified using chi-square tests and logistic regression. Sensitivity and specificity for detecting LEL and positive and negative likelihood ratios (LR+, LR−) were estimated for the entire sample and for subsamples defined by obesity (body mass index ≥30 versus &lt;30 kg/m2), which may confound the accurate diagnosis of LEL. Results Questionnaires were completed by 127 women (LEL group, n=88; UEL group, n=39). A sum of 13 items (score range=0–52) was the most discriminating. Using a cutoff score of ≥5 points, the sensitivity and specificity for detecting LEL among all participants were 95.5% and 86.5%, respectively (LR+=7.1, LR−=0.05), and 94.8% and 76.5%, respectively (LR+=4.0, LR−=0.07), for participants who were obese. Limitations By enumerating a sample with a high prevalence of LEL, a spectrum bias may have been introduced, which may have affected the accuracy of the screening questionnaire. Conclusions The brief, 13-item self-report questionnaire is a sensitive and specific tool for detecting clinically relevant LEL among women, including those with a body mass index of ≥30 kg/m2.