Telephone Assistance Research Articles

High Level of Integration in Integrated Disease Management Leads to Higher Usage in the e-Vita Study: Self-Management of Chronic Obstructive Pulmonary Disease With Web-Based Platforms in a Parallel Cohort Design.

BackgroundWorldwide, nearly 3 million people die of chronic obstructive pulmonary disease (COPD) every year. Integrated disease management (IDM) improves disease-specific quality of life and exercise capacity for people with COPD, but can also reduce hospital admissions and hospital days. Self-management of COPD through eHealth interventions has shown to be an effective method to improve the quality and efficiency of IDM in several settings, but it remains unknown which factors influence usage of eHealth and change in behavior of patients.ObjectiveOur study, e-Vita COPD, compares different levels of integration of Web-based self-management platforms in IDM in three primary care settings. The main aim of this study is to analyze the factors that successfully promote the use of a self-management platform for COPD patients.MethodsThe e-Vita COPD study compares three different approaches to incorporating eHealth via Web-based self-management platforms into IDM of COPD using a parallel cohort design. Three groups integrated the platforms to different levels. In groups 1 (high integration) and 2 (medium integration), randomization was performed to two levels of personal assistance for patients (high and low assistance); in group 3 there was no integration into disease management (none integration). Every visit to the e-Vita and Zorgdraad COPD Web platforms was tracked objectively by collecting log data (sessions and services). At the first log-in, patients completed a baseline questionnaire. Baseline characteristics were automatically extracted from the log files including age, gender, education level, scores on the Clinical COPD Questionnaire (CCQ), dyspnea scale (MRC), and quality of life questionnaire (EQ5D). To predict the use of the platforms, multiple linear regression analyses for the different independent variables were performed: integration in IDM (high, medium, none), personal assistance for the participants (high vs low), educational level, and self-efficacy level (General Self-Efficacy Scale [GSES]). All analyses were adjusted for age and gender.ResultsOf the 702 invited COPD patients, 215 (30.6%) registered to a platform. Of the 82 patients in group 1 (high integration IDM), 36 were in group 1A (personal assistance) and 46 in group 1B (low assistance). Of the 96 patients in group 2 (medium integration IDM), 44 were in group 2A (telephone assistance) and 52 in group 2B (low assistance). A total of 37 patients participated in group 3 (no integration IDM). In all, 107 users (49.8%) visited the platform at least once in the 15-month period. The mean number of sessions differed between the three groups (group 1: mean 10.5, SD 1.3; group 2: mean 8.8, SD 1.4; group 3: mean 3.7, SD 1.8; P=.01). The mean number of sessions differed between the high-assistance and low-assistance groups in groups 1 and 2 (high: mean 11.8, SD 1.3; low: mean 6.7, SD 1.4; F1,80=6.55, P=.01). High-assistance participants used more services (mean 45.4, SD 6.2) than low-assistance participants (mean 21.2, SD 6.8; F1,80=6.82, P=.01). No association was found between educational level and usage and between GSES and usage.ConclusionsUse of a self-management platform is higher when participants receive adequate personal assistance about how to use the platform. Blended care, where digital health and usual care are integrated, will likely lead to increased use of the online program. Future research should provide additional insights into the preferences of different patient groups.Trial RegistrationNederlands Trial Register NTR4098; http://www.trialregister.nl/trialreg/admin/rctview.asp?TC=4098 (Archived by WebCite at http://www.webcitation.org/6qO1hqiJ1)

A pilot study exploring the use of a telephone-assisted planning intervention to promote parental support for physical activity among children and youth with disabilities

Parent support is an important contributor to physical activity (PA) among children and youth with disabilities (CYD). Although many parents of CYD are motivated to provide parent PA support, CYD remain insufficiently active. The multi-process action control model has been applied to understand parent PA support and highlights behavioral regulation strategies such as action and coping planning as critical for translating intentions into behavior. Parents may struggle to create and carryout planning without support. There is no known research examining telephone support as a tool to promote planning and subsequent parent PA support behavior. MethodParents (43 mothers and 6 fathers) of CYD (child Mage = 12.53 years ± 5.53; 75% male; 38.6% developmental disability) completed a baseline questionnaire and were subsequently randomized to a telephone-assisted planning experimental group twice over four weeks (n = 23) or a control group who had access to planning tools but no telephone assistance (n = 26). ResultsNo significant main or interaction effects emerged for parent PA support behavior. However, a significant time × condition interaction was found for behavioral regulation strategies (i.e., action and coping planning and self-monitoring; F(1,44) = 5.05, p = 0.03) indicating a significant increase in the use of behavioral regulation strategies for parent PA support from baseline, for parents assigned to the telephone-assisted intervention. ConclusionThese findings suggest potential for planning support as a tool to enhance behavioral regulation strategies related to parent PA support among parents of CYD.

Long-term Adherence to Colorectal Cancer Screening; 5-Year Results from the Systems of Support to Increase Colorectal Cancer Screening Trial

Abstract Colorectal cancer (CRC) is the second-leading cause of cancer deaths. Mortality could be rapidly reduced through higher uptake and adherence to CRC screening. Information on long-term screening adherence comes from organized programs that lack a comparison group. Objective: Systems of Support to Increase Colorectal Cancer Screening is an ongoing trial testing a centralized mailed and phone-based program to increase long-term CRC screening adherence. We hypothesized that compared to usual care (UC) intervention-arm patients would have more time in compliance with CRC screening guidelines over 5 years. Methods: The setting was an integrated healthcare organization in Washington State. UC included patient-centered medical home with clinic-based strategies to increase screening. Participants included 4675 individuals initially aged 50–74, not current for CRC screening. Intervention arms combined were compared to UC. The primary outcome was the percent of time covered for CRC screening over 5 years of follow-up. Screening tests contributed covered time based on national guidelines for screening intervals. All participants contributed data, but were censored at disenrollment, death, age 76, or CRC diagnosis. Interventions: Patients were randomly assigned to receive UC, or one of three stepped care interventions: 1. Mailings including mailed fecal tests, a call-in number if colonoscopy or sigmoidoscopy was preferred; 2. Mailings plus brief telephone assistance; 3. Mailings and telephone assistance plus nurse navigation. In year 3, intervention group participants still CRC screening-eligible were randomized to stopped or continued mailed interventions only. Results: Compared to UC, intervention participants had 31% more time not in need of CRC testing (adjusted rate ratio, weighted for exposure time 1.31 [1.25–1.37], 47.2% vs. 62.0% covered time) over 5 years. Fecal testing was responsible for almost all additional covered time. Compared to intervention participants, UC individuals were more likely never to have completed any CRC testing over 5 years (17.4% vs. 10.3%, net difference 7.2%, P < 0.001) Conclusions: An organized mail and phone program led to increased CRC screening adherence over 5 years, mainly because of regular fecal testing uptake.

Out-of-hospital cardiac arrest (OHCA) attended by mobile emergency teams with a physician on board. Results of the Spanish OHCA Registry (OSHCAR)

Most survival outcomes in out-of-hospital cardiac arrest (OHCA) are provided by emergency medical services (EMS) without a doctor on board. Our objective was to determine such outcomes in a whole country with public physician-led EMS. MethodsWe analyzed data from a nationwide prospective registry of OHCA cases attended by 19 public EMS in Spain, covering the period from 1-October 2013 to 30-October 2014. ResultsAdvanced life support (ALS) was initiated in 9347 cases (incidence 18.6 cases/105 inhabitants per year). Resuscitation was considered futile in 558 cases (5.9%), and ALS was continued in 8789 cases (94.1%); mean age 63.5±17 years, 72.1% men. Initial rhythm was shockable in 22.1% of cases. Basic life support (BLS) was provided by bystanders in 1602 (24%) cases (635 of them with telephone assistance from the dispatch center). Of 8789 patients receiving ALS, 72.1% men, 2669 (30.4%) patients had return of spontaneous circulation on hospital arrival, 50.6% when the initial rhythm was shockable. Hospital discharge with good neurological status (CPC1–2) was found in 11.1% of the study population and in 27.6% when considering the Utstein comparator group of patients. A total of 216 (2.5%) patients arrived at the hospital with ongoing resuscitation, of whom only one survived with CPC1–2, and 165 (1.9%) patients were included in non-heart-beating donation programs. ConclusionsIn Spain with physician-led EMS, OHCA survival with CPC1-2 reached a reasonable percentage despite only a modest contribution of bystander BLS. Ongoing resuscitation strategy seems to be futile except when considering non-heart beating donation programs.

Telephone Support in an Internet-Based Treatment for Sleep Problems in Early Childhood

Study background: Mild to severe sleep problems are reported in 3% to 56% of young children. Behaviourbased treatments are highly effective in improving children´s sleep. The purpose of this work was to examine the efficacy of an Internet-based intervention for young children´s sleep disturbances (Mini-KiSS Online) and to assess the effect of telephone support for parents. Methods: Two intervention conditions (written information with or without additional weekly telephone support) were compared to a waiting-list control condition. N=199 parents with their children (aged 6-63 months) were randomly assigned to one of the study conditions. The treatment consisted of six written information modules based on a cognitive-behavioural approach. One of the treatment groups had additional weekly telephone support. Data of sleep diary, parental behaviour, CBCL 1.5-5 (pre, post, 3-month follow-up) and treatment evaluation were collected. Results: Acceptance of Mini-KiSS Online was high. Children in both treatment conditions showed significant increase in sleep efficacy and reductions in sleep onset latency, duration of night waking, or subjective global ratings while there was no or less change in the control condition. Parents of both treatment conditions reduced their parental presence and physical contact to the child. A benefit of personal assistance was found for treatment evaluation and dropout rates. Conclusion: Mini-KiSS Online is an effective and highly accepted internet-based intervention to reduce sleep problems in young children. Personal telephone assistance counted for higher satisfaction and lower dropouts but not for further improvement of the sleep behaviour of the child.

Effective and sustainable advice line promotes safe vaccine practices.

The SHOT LINE Telephone Assistance Resource provides consistent and timely education to healthcare providers ensuring safe delivery of immunizations. A local health district created and implemented an advice line to assist healthcare personnel with immunization storage or administration questions. Healthcare workers with varying levels of education call with requests for information including vaccine administration, storage and handling, scheduling, contraindications, and timing. Ten years of call data to the SHOT LINE were analyzed through categorizing type of calls, personnel calling, facility type, information needed, and education provided. There were 3032 calls received from various job types. The most frequent inquiries were vaccine-specific calls, timing, and vaccine schedules. Medical assistants from family medicine clinics called the most. Five percent of the calls included reports of immunization errors. Healthcare personnel reported errors and self-disclosed making errors; 7% of all calls were errors in the first 2 years, but decreased to 5.4% in the last 8 years. The SHOT LINE telephone assistance provides timely education to healthcare personnel whose primary responsibilities are immunization practice management, administration, and handling. The findings reveal a significant need for timely advice in immunization practice management. Error reporting was an unexpected outcome of this advice line. Call categories of vaccine-specific information, vaccine timing, and schedules were similar across all groups of callers. The advice line has grown to include parents, school nurses, childcare providers, and emergency personnel. In summary, the SHOT LINE prevents errors, increases accuracy of vaccine management, and provides 'just in time' education.

Evaluación de la asistencia telefónica a demanda en cuidadores de pacientes con enfermedad de Alzheimer

IntroductionTelephone assistance is a common practice in neurology, although there are only a few studies about this type of healthcare. We have evaluated a Telephone Assistance System (TAS) for caregivers of patients with Alzheimer's disease (AD) from 2 points of view: financially and according to the level of satisfaction of the caregiver. Patients and methods97 patients with a diagnosis of AD according to NINCDS-ADRDA criteria and their 97 informal caregivers were selected. We studied cost differences between on-site assistance and telephone assistance (TAS) for 12 months. We used a self-administered questionnaire to assess the level of satisfaction of caregivers at the end of the study period. ResultsTAS savings amounted to 80.05 ± 27.07 euros per user. 73.6% of the caregivers consider TAS a better or much better system than on-site assistance, while only 2.6% of the caregivers considered TAS a worse or much worse system than on-site assistance. ConclusionsTelephone assistance systems are an efficient healthcare resource for monitoring patients with AD in neurology departments. Furthermore, the level of user satisfaction was high. We therefore consider that telephone assistance service should be offered by healthcare services.

Reverse innovation antecedents

Purpose – The purpose of this paper is to determine the antecedents of reverse innovation. Design/methodology/approach – Data were collected through an online survey administered using telephone assistance and sent to the 1,000 largest (in terms of revenue) foreign subsidiaries in Brazil. The responding companies numbered 167. For the data analysis, the authors chose the statistical technique of structural equation modeling. Findings – The paper shows that reverse innovation is related to headquarters’ support, autonomy, and integration. Specifically, the authors consider the power of strategic integration between headquarters and subsidiaries as one of the important antecedents of reverse innovation. Practical implications – Integration has an important role to reverse innovation. In order to stimulate integration, the executive of a subsidiary can make such efforts as invest in the mechanism of the relationship and exchange knowledge with headquarters. For example, it is recommended to encourage travel to the headquarters to more accurately align perceptions of parent and subsidiary executives and to utilize expatriates from headquarters to provide knowledge to subsidiaries about the main processes of the company and to promote subsidiary innovations. Originality/value – Literature contains some articles discussing and relating some cases of reverse innovation. However, this paper shows the organizational structure necessary for reverse innovation.

A Finger-Stick Whole-Blood HIV Self-Test as an HIV Screening Tool Adapted to the General Public

BackgroundIn 2013, the French Health Authority approved the use of HIV self-tests in pharmacies for the general public. This screening tool will allow an increase in the number of screenings and a reduction in the delay between infection and diagnosis, thus reducing the risk of further infections. We previously compared 5 HIV-self test candidates (4 oral fluid and one whole blood) and demonstrated that the whole blood HIV test exhibited the optimal level of performance (sensitivity/specificity). We studied the practicability of an easy-to-use finger-stick whole blood HIV self-test “autotest VIH®”, when used in the general public.Methods and MaterialsThis multicenter cross-sectional study involved 411 participants from the Parisian region (AIDES and HF association) between April and July 2014 and was divided into 2 separate studies: one evaluating the capability of participants to obtain an interpretable result using only the information notice, and a second evaluating the interpretation of test results, using a provided chart.ResultsA total of 411 consenting participants, 264 in the first study and 147 in the second, were included. All participants were over 18 years of age. In the first study, 99.2% of the 264 participants correctly administered the auto-test, and 21.2% needed, upon their request, telephone assistance. Ninety-two percent of participants responded that the test was easy/very easy to perform, and 93.5% did not find any difficulty obtaining a sufficient good quantity of blood. In the second study, 98.1% of the 147 participants correctly interpreted the results. The reading/interpretation errors concerned the negative (2.1%) or the indeterminate (3.3%) auto-tests.ConclusionsThe success rate of handling and interpretation of this self-test is very satisfactory, demonstrating its potential for use by the general public and its utility to increase the number of opportunities to detect HIV patients.

Assessing the Helpfulness of One Parenting Assistance Helpline

This study examined the services provided by one statewide warmline established to assist parents and caregivers of children from birth through adolescence. Warmlines offer telephone-based, non-crisis support for individuals experiencing diverse issues that include parenting questions and concerns. The University of Alabama Child Development Resources collaborated with the Alabama State Department of Child Abuse and Neglect Prevention to institute the Parenting Assistance Line to provide information and support to parents and caregivers of children, age birth through adolescence. Overall, the staff of the Parenting Assistance Line responded to 9487 calls during the 6 years of data reported here. Through a secondary data analysis of calls to the Parenting Assistance Line from June 2007 to July 2013, this study describes the concerns of callers in relation to the ages of the children about whom they are calling and also evaluates the perceptions of the helpfulness of the information and support provided by the warmline. We found that frequently calls involved parent support and parental stress for parents and caregivers of children from infancy through adolescence. The findings suggest that telephone assistance lines offer a viable choice for parents and caregivers seeking affordable and accessible resources when stressed by the responsibilities of caring for children and adolescents and/or seeking information related to parenting issues. The study identified the limitations of research involving secondary data collected for purposes other than research that program administrators and evaluators should consider when planning and implementing services of this nature.

An economic evaluation of colorectal cancer screening in primary care practice.

Recent colorectal cancer screening studies focus on optimizing adherence. This study evaluated the cost effectiveness of interventions using electronic health records (EHRs); automated mailings; and stepped support increases to improve 2-year colorectal cancer screening adherence. Analyses were based on a parallel-design, randomized trial in which three stepped interventions (EHR-linked mailings ["automated"]; automated plus telephone assistance ["assisted"]; or automated and assisted plus nurse navigation to testing completion or refusal [navigated"]) were compared to usual care. Data were from August 2008 to November 2011, with analyses performed during 2012-2013. Implementation resources were micro-costed; research and registry development costs were excluded. Incremental cost-effectiveness ratios (ICERs) were based on number of participants current for screening per guidelines over 2 years. Bootstrapping examined robustness of results. Intervention delivery cost per participant current for screening ranged from $21 (automated) to $27 (navigated). Inclusion of induced testing costs (e.g., screening colonoscopy) lowered expenditures for automated (ICER=-$159) and assisted (ICER=-$36) relative to usual care over 2 years. Savings arose from increased fecal occult blood testing, substituting for more expensive colonoscopies in usual care. Results were broadly consistent across demographic subgroups. More intensive interventions were consistently likely to be cost effective relative to less intensive interventions, with willingness to pay values of $600-$1,200 for an additional person current for screening yielding ≥80% probability of cost effectiveness. Two-year cost effectiveness of a stepped approach to colorectal cancer screening promotion based on EHR data is indicated, but longer-term cost effectiveness requires further study.

Consejería Telefónica, un Cuidado Imaginario Real que Apoya el Automanejo de Personas con Enfermedades Crónicas

Las enfermedades cronicas aumentan cada dia, impactando a personas, servicios sanitarios y sociedad. Actualmente, los sistemas de salud implementan innovadoras estrategias, como la asistencia telefonica para apoyar el automanejo de personas con Diabetes, mejorando su compensacion metabolica y literacidad. Dicha atencion remota podria realizarla una enfermera en formacion, previa capacitacion. Objetivos: Describir una experiencia en consejerias telefonicas de apoyo al automanejo de personas con Diabetes Mellitus tipo 2. Metodologia: En el contexto del proyecto: Ensayo clinico controlado de Literacidad en Salud, para incrementar la compensacion metabolica y autoeficacia de personas con Diabetes Mellitus tipo 2 en Centros de Salud Familiar de la comuna de La Florida (FONIS SA13/20357), se realizaron consejerias telefonicas a diabeticos durante seis meses, complementado con sesiones presenciales grupales para aumentar su automanejo y nivel de literacidad. Resultados: El contacto a distancia es diferente a la atencion directa; causando incertidumbre. El uso del telefono impacta el ser, saber y hacer profesional. La comunicacion a distancia apoya toma de decisiones en salud. El oido y voz - herramientas de cuidado- remueven necesidades del enfermo, fomentan la comprension de su enfermedad, visibilizan motores de cambio y construyen motivacion en una atencion humanizada para el automanejo; interaccion imaginaria real. Conclusiones: El concepto de literacidad en salud, entrevista motivacional y tecnologias en el cuidado serian utiles en la formacion de pregrado de profesionales de salud; promoviendo el automanejo. Se propone develar la experiencia vivida por consejeros telefonicos para apoyarlos.

An Education- and Telephone-Based Intervention to Improve Follow-up to Vision Care in Patients With Diabetes: A Prospective, Single-Blinded, Randomized Trial.

The aim was to evaluate the effectiveness of a multipronged intervention on diabetic dilated fundus examination (DFE) adherence. In a prospective trial, 521 patients with diabetes who were due for follow-up DFEs were randomized to usual care or the intervention group. Usual care received a form letter reminder to schedule and an automated reminder phone call prior to their appointment. Intervention participants received an educational brochure about diabetic eye disease and a personalized letter reminder to schedule. A research assistant called intervention participants to help schedule the appointment, and they received a reminder letter and an automated phone call prior to the scheduled visit. Patients in the intervention group were significantly more likely to schedule (63% vs 40%; P < .0001) and complete their appointment (48% vs 30%; P < .0001) compared with usual care. A multipronged intervention, including an educational mailing and telephone assistance with scheduling an appointment, significantly improved diabetic DFE adherence.

The Impact of Assistive Technologies on Formal and Informal Home Care

Assistive technologies help people with disabilities compensate for their impairments. This study assessed which of 5 categories of assistive technologies-indoor/outdoor mobility, bed transfer, bathing, toileting, and telephone assistance-were substitutes or complements for human personal assistance by differentiating between total and formal personal assistance service (PAS) hours. The study analyzed 2004 National Long-Term Care Survey community-dwelling respondents receiving assistance with activities of daily living. Ordinary least squares (OLS) on total PAS hours was estimated on the entire sample, and logit and OLS models were estimated on the likelihood and hours of formal PAS, respectively. Assistive technology for indoor/outdoor mobility, bed transfer, and bathing was found to be substitutes for total PAS, whereas assistive technology for bed transfer and toileting was found to be complements for the use of formal PAS. Telephone assistance was not significant for either total or formal PAS hours. The use of some assistive technologies by older people with disabilities appears to reduce the amount of informal care provided, but not the amount of paid PAS. Thus, this study does not provide support for the hypothesis that the use of assistive technologies will reduce use of paid care and, therefore, spending for long-term care.

An Automated Intervention With Stepped Increases in Support to Increase Uptake of Colorectal Cancer Screening

Screening decreases colorectal cancer (CRC) incidence and mortality, yet almost half of age-eligible patients are not screened at recommended intervals. To determine whether interventions using electronic health records (EHRs), automated mailings, and stepped increases in support improve CRC screening adherence over 2 years. 4-group, parallel-design, randomized, controlled comparative effectiveness trial with concealed allocation and blinded outcome assessments. (ClinicalTrials.gov: NCT00697047) 21 primary care medical centers. 4675 adults aged 50 to 73 years not current for CRC screening. Usual care, EHR-linked mailings ("automated"), automated plus telephone assistance ("assisted"), or automated and assisted plus nurse navigation to testing completion or refusal ("navigated"). Interventions were repeated in year 2. The proportion of participants current for screening in both years, defined as colonoscopy or sigmoidoscopy (year 1) or fecal occult blood testing (FOBT) in year 1 and FOBT, colonoscopy, or sigmoidoscopy (year 2). Compared with those in the usual care group, participants in the intervention groups were more likely to be current for CRC screening for both years with significant increases by intensity (usual care, 26.3% [95% CI, 23.4% to 29.2%]; automated, 50.8% [CI, 47.3% to 54.4%]; assisted, 57.5% [CI, 54.5% to 60.6%]; and navigated, 64.7% [CI, 62.5% to 67.0%]; P < 0.001 for all pair-wise comparisons). Increases in screening were primarily due to increased uptake of FOBT being completed in both years (usual care, 3.9% [CI, 2.8% to 5.1%]; automated, 27.5% [CI, 24.9% to 30.0%]; assisted, 30.5% [CI, 27.9% to 33.2%]; and navigated, 35.8% [CI, 33.1% to 38.6%]). Participants were required to provide verbal consent and were more likely to be white and to participate in other types of cancer screening, limiting generalizability. Compared with usual care, a centralized, EHR-linked, mailed CRC screening program led to twice as many persons being current for screening over 2 years. Assisted and navigated interventions led to smaller but significant stepped increases compared with the automated intervention only. The rapid growth of EHRs provides opportunities for spreading this model broadly.

Personalized contraceptive assistance and uptake of long-acting, reversible contraceptives by postpartum women: a randomized, controlled trial

BackgroundMany women who intend to use long-acting, reversible contraceptives (LARCs) postpartum do not follow through with initiating use. The objectives of this study were to determine whether support from a contraceptive personal assistant could increase the uptake of LARCs by 3 months postpartum, and to identify risk factors for nonuptake of LARCs among women who planned LARC use. Study DesignThis is a randomized, controlled trial of 50 low-income postpartum women who desired LARC. The intervention group received telephone contact from a personal assistant who provided contraception education, facilitation of insurance coverage, appointment scheduling and assistance with childcare and transportation. The control group received routine follow up. Women were surveyed immediately and 3 months postpartum regarding contraceptive use and anticipated barriers to LARC use. ResultsA similar proportion of women in both groups received LARC [control 16/24 (67%), intervention 18/25 (72%), p=.76]. More primiparous (86.4%) than multiparous (55.5%) women obtained LARC (p=.04). In addition, women with more prenatal visits were more likely to have initiated LARC (odds ratio, 95% confidence interval for each increased visit: 1.50, 1.15–1.96). No other demographic factors were related to LARC uptake. ConclusionsProviding telephone assistance to help navigate barriers did not increase postpartum uptake of LARCs. A personal history of clinic visit no-shows and/or infrequent prenatal visits were related to poor uptake of LARCs postpartum.

Abstract LB-36: The Whole Cancer Patient: Addressing the Legal Concerns

Abstract ORGANIZATION: The Cancer Legal Resource Center (CLRC) is a national, joint program of the Disability Rights Legal Center and Loyola Law School Los Angeles. The mission of the Disability Rights Legal Center (DRLC) is to champion the rights of people with disabilities through education, advocacy and litigation. The CLRC provides free information and resources on cancer-related legal issues to cancer survivors, caregivers, health care professionals, employers, and others coping with cancer. A cancer diagnosis may carry with it a variety of legal issues, including employment discrimination and taking time off work, insurance coverage, access to health care and government benefits, and estate planning. These legal issues can cause people unnecessary worry, confusion, and stress, and can be overwhelming. When these legal issues are not addressed, people may find that although they have gotten through treatment, they have lost their homes, jobs, or insurance coverage. The Cancer Legal Resource Center addresses these cancer-related legal issues by providing free information and resources to people coping with cancer. The CLRC has a national, toll-free Telephone Assistance Line (866-THE-CLRC) where callers can receive free and confidential information about relevant laws and resources for their particular situation. Members of the CLRC's Professional Panel of volunteer attorneys, insurance agents, and accountants can provide additional assistance. Throughout its 15-year history, the CLRC has served over 310,000 people through the national Telephone Assistance Line, Cancer Rights Conferences, seminars, workshops, education and outreach programs, and other cancer community activities throughout the country. For more information about the CLRC and cancer-related legal issues, visit www.CancerLegalResourceCenter.org. PURPOSE: The cancer community and health care professionals alike have increasingly focused upon the need to provide cancer care for the “whole patient.” This means that care should focus not just on the medical needs, but also on other needs such as the psychological and social concerns of the individual, including legal, employment, insurance, and financial concerns. The CLRC addresses these needs by providing free information and resources on cancer-related legal issues to people with cancer, their families, friends, health care professionals, and others coping with cancer. The CLRC gathered information from cancer patients and caregivers_as well as health care professionals - to examine the common legal issues cancer patients face. METHODS: Between 2009 and 2010, the CLRC surveyed 201 health care professionals about the legal issues facing their clients and patients. The survey asked the professionals about the demographics of the cancer patients they saw and the types of legal questions posed by patients. In addition to the survey, we analyzed data from the calls that we received to our Telephone Assistance Line (TAL) from 2009 through 2011. In 2009, the CLRC received 4,075 calls to the TAL. In 2010, the numbers increased to 4,227. In 2011, the CLRC received 3,985 calls to the TAL. The CLRC analyzes the calls that are received by categorizing each call by legal issue. Each call is labeled by a primary legal issue, and if applicable, a secondary legal issue. Therefore, some calls can span multiple issue areas in the data. FINDINGS: This poster will include graphs depicting the major legal issue areas and the frequency that both professionals and the CLRC were asked about them. The vast majority of health care professionals felt that both an individual's socio-economic status and his or her insurance status created disparities in treatment once there was a diagnosis of cancer. These professionals also felt, on average, that better information, on 16 out of 19 issue areas we asked about, would contribute to fewer disparities in care after a diagnosis. CONCLUSION: In order to successfully care for the whole cancer patient, there is a need to provide legal information and education for patients, caregivers, and health care professionals. Furthermore, access to this information may help to decrease disparities in care arising from an individual's socio-economic and insurance status. Citation Format: {Authors}. {Abstract title} [abstract]. In: Proceedings of the 103rd Annual Meeting of the American Association for Cancer Research; 2012 Mar 31-Apr 4; Chicago, IL. Philadelphia (PA): AACR; Cancer Res 2012;72(8 Suppl):Abstract nr LB-36. doi:1538-7445.AM2012-LB-36

Life Satisfaction of Two-Year Post-Stroke Survivors: Effects of Socio-Economic Factors, Motor Impairment, Newcastle Stroke-Specific Quality of Life Measure and World Health Organization Quality of Life – bref of Informal Caregivers in Luxembourg and a Rural Area in Portugal

Background: Life satisfaction of stroke survivors is known to be associated with socio-economic factors and the survivor’s and his/her caregiver’s quality of life, but their respective influence remains to be fully elucidated. Purpose: To analyse the stroke survivors’ life satisfaction 2 years after the event and its relationships with quality of life, socio-economic and stroke-related characteristics, and with informal caregivers’ life satisfaction and quality of life . Methods: Over 18 months, all stroke patients from Luxembourg and north-eastern Portugal who lived at home were identified from the Inspection Générale de la Sécurité Sociale and hospital records, respectively. The clinical diagnosis of cerebrovascular disease was confirmed. We excluded all patients who declared that stroke did not result in neurological impairments at the time of stroke from the statistical analysis. The samples comprised 79 patients in Luxembourg and 48 in Portugal. Patients and the people they identified as their main caregivers were interviewed using validated questionnaires measuring life satisfaction, i.e. the Newcastle Stroke-Specific Quality of Life (Newsqol – 11 subscales), which identifies the areas affected by stroke among patients, and the World Health Organization Quality of Life – bref (Whoqol-bref – 4 subscales) of informal caregivers. Survivors without neurological impairment at the time of stroke were excluded. Data were analysed via multiple-regression models. Results: Life satisfaction was higher among women and lower among subjects with impaired motor functions. It was lower among Portuguese respondents with low-level education (<12th grade) and higher among those at work (37.6/100). In Luxembourg, retired people had more life satisfaction than did working people (–7.9/100). Controlling for socio-economic factors, life satisfaction was associated with feelings- Newsqol (slope 0.25) among Luxembourg residents, and with feelings-, mobility- and self-care-Newsqol (slopes 0.24, 0.27 and 0.33, respectively) among Portuguese respondents. Life satisfaction of patients was strongly related to that of family caregivers among the Portuguese respondents (slope 0.66) but the relationship was moderate in Luxembourg (slope 0.28). The survivors’ life satisfaction was not correlated with any Whoqol-bref domain in the Luxembourg group, but was correlated with the Whoqol-bref psychological, social relationships and environment domains among the Portuguese respondents (slopes 0.55, 0.59 and 0.51, respectively). Conclusions: The life satisfaction scale and the Newsqol stroke instrument, which identify areas of quality of life affected by stroke, are reliable patient-centred markers of intervention outcome. They can be used within the framework of medical follow-up (such as telephone assistance, clinical practice and prevention). Depending on the stroke survivor’s and the family caregiver’s habitual lifestyle and material circumstances, enhancement of a caregiver’s quality of life can help maintain the patient’s life satisfaction, particularly in a rural setting.

Reducing Perceived Barriers to Nursing Homes Data Entry in the Advancing Excellence Campaign: The Role of LANEs (Local Area Networks for Excellence)

Advancing Excellence (AE) is a coalition-based campaign concerned with how society cares for its elderly and disabled citizens. The purpose of this project was to work with a small group of volunteer nursing homes and with local quality improvement networks called LANEs (Local Area Networks for Excellence) in 6 states in a learning collaborative. The purpose of the collaborative was to determine effective ways for LANEs to address and mitigate perceived barriers to nursing home data entry in the national Advancing Excellence campaign and to test methods by which local quality improvement networks could support nursing homes as they enter data on the AE Web site. A semistructured telephone survey of nursing homes was conducted in 6 states. Participants included LANEs from California, Georgia, Massachusetts, Michigan, Oklahoma, and Washington. Facility characteristics were obtained from a series of questions during the telephone interview. Three states (GA, MA, OK) piloted a new spreadsheet and process for entering data on staff turnover, and 3 states (CA, MI, WA) piloted a new spreadsheet and process for entering data on consistent assignment. Many of the nursing homes we contacted had not entered data for organizational goals on the national Web site, but all were able to do so with telephone assistance from the LANE. Eighty-five percent of nursing homes said they would be able to collect information on advance directives if tools (eg, spreadsheets) were provided. Over 40% of nursing homes, including for-profit homes, were willing to have staff and residents/families enter satisfaction data directly on an independent Web site. Nursing homes were able to convey concerns and questions about the process of goal entry, and offer suggestions to the LANEs during semistructured telephone interviews. The 6 LANEs discussed nursing home responses on their regularly scheduled calls, and useful strategies were shared across states. Nursing homes reported that they are using Advancing Excellence target setting and goal entry to improve care, and that they would use new tools such as those for measuring satisfaction, consistent assignment, and advance directives. Having LANE members contact nursing homes directly by telephone engaged the nursing homes in providing valuable feedback on new Advancing Excellence goals and data entry. It also provided an opportunity to clarify issues related to the campaign and ongoing quality improvement efforts, including culture change.

Do metronomes improve the quality of life in people with Parkinson’s disease? A pragmatic, single-blind, randomized cross-over trial

Objective: To evaluate the effect of acoustic cueing using metronomes on the quality of life of people with moderate to severe Parkinson’s disease. Study design: Pragmatic, single-blind, randomized cross-over trial. Participants: Forty-two people aged 50—85 years, in Hoehn and Yahr stage II—IV and on stable medication. Eight were lost to follow-up. Intervention: Participants were randomized using concealed allocation to either an early group (n = 21) to receive an electronic metronome without therapy but limited support (5—10 minutes instruction and on-demand telephone assistance) for four weeks, or a late group (n = 21) to receive the same intervention at 10 weeks. In both groups the beat frequency was initially set to be comfortable for walking. Outcomes measures: Primary and secondary outcomes were measured at baseline, 4, 10 and 14 weeks using the Parkinson’s Disease Questionnaire 39 (PDQ-39), the Short Form 36 version 2 (SF-36 version 2) and a falls diary. Results: There were positive effects in six domains of the SF-36 version 2 and eight domains of the PDQ-39, although only one mean difference was clinically important: the role limitation (emotional) domain of SF-36 version 2 (a mean difference of 3.77, 95% confidence interval (CI), —2.68 to 10.22), a secondary outcome. None of these changes were statistically significant. There were no statistically significant differences in falls rates over the study period. Ten participants (24%) wanted to continue with their metronomes at the end of the study. Conclusion: To demonstrate metronomes are beneficial on the role limitation domain of the SF-36 version 2 in people with moderate to severe Parkinson’s disease a sample size of 600 would be required.