US data on children and youth caregivers in amyotrophic lateral sclerosis.

OBJECTIVE: An estimated 1.4 million young caregivers (<19 years of age) in the United States provide care to ill family members yet remain hidden from state and national caregiving programs and services, including amyotrophic lateral sclerosis (ALS) caregiving services. Given the intensive care needs and acuity of ALS, appreciation of the young caregiver experience within the family context may have a significant impact on patient and family quality of life. This article seeks to identify family and youth caregiver characteristics and perceptions of care through interviews with 38 youth caregivers and their families with ALS. METHODS: Online adult surveys and follow-up youth interviews were conducted with families with ALS across the United States in this cross-sectional study. Participants were accessed through chapters of the ALS Association. Both thematic content analysis and descriptive statistics were used. RESULTS: Youth caregivers (n = 38) ranged in age from 8 to 18 years and spent an average of 5 h/d providing care for an average of 12 tasks. Persons with ALS relied on youth primarily due to cost and identified complex feelings about relying on youth caregivers, including feeling like a failure, guilty, but proud. CONCLUSION: Youth are intricately involved in all areas of caregiving in ALS. They are isolated and have little training or guidance in care, yet they are able to identify ways to manage their care burden. Results provide clear implications for health care professionals in designing best care and support practices for persons with ALS and their young caregivers.

Energy Cost of Slow and Normal Gait Speeds in Low and Normally Functioning Adults.

OBJECTIVE: Slow walking speed paired with increased energy cost is a strong predictor for mortality and disability in older adults but has yet to be examined in a heterogeneous sample (ie, age, sex, disease status). The aim of this study was to examine energy cost of slow and normal walking speeds among low- and normal-functioning adults. DESIGN: Adults aged 20-90 yrs were recruited for this study. Participants completed a 10-m functional walk test at a self-selected normal walking speed and were categorized as low functioning or normal functioning based on expected age- and sex-adjusted average gait speed. Participants completed two successive 3-min walking stages, at slower than normal and normal walking speeds, respectively. Gas exchange was measured and energy cost per meter (milliliter per kilogram per meter) was calculated for both walking speeds. RESULTS: Energy cost per meter was higher (P < 0.0001) in the low-functioning group (n = 76; female = 59.21%; mean ± SD age = 61.13 ± 14.68 yrs) during the slower than normal and normal (P < 0.0001) walking speed bouts compared with the normal-functioning group (n = 42; female = 54.76%; mean ± SD age = 51.55 ± 19.51 yrs). CONCLUSIONS: Low-functioning adults rely on greater energy cost per meter of walking at slower and normal speeds. This has implications for total daily energy expenditure in low-functioning, adult populations.

Muscle activation and energy expenditure of sedentary behavior alternatives in young and old adults.

The physiological mechanisms that underlie the metabolic benefits of breaking up sedentary behavior (SB) have yet to be determined. The purpose of this study is to compare energy expenditure (EE) and muscle activation (MA) responses to sitting and four SB alternatives in younger and older adults. Twenty-two adults, grouped by age (21-35 and 62-76 years), completed five randomly ordered 20 min tasks: (1) continuous sitting (Sit), (2) sitting on a stability ball (Ball), (3) continuous standing (Stand), (4) sitting interrupted by walking (S/W), and (5) sitting interrupted by standing (S/S). Muscle activation of two upper (trapezius and erector spinae) and two lower (rectus femoris and medial gastrocnemius) body muscles and total body EE were measured continuously. A linear mixed model using gender and age as a covariate with Bonferroni adjustment were used to determine significant differences between tasks. Collectively, S/W produced significantly higher MA and EE compared with Sit (p < 0.001). Stand and Ball provided significantly greater EE, but not MA, compared to Sit (p < 0.05), while S/S did not significantly change EE or MA compared to Sit. There were no net EE differences when comparing age groups across the tasks. Upper body MA was not consistent in both age groups across tasks. Specifically, during S/W the upper body MA of older adults (9.7 ± 1.5% MVC) was double that of young adults (4.8 ± 0.7% MVC, p = 0.006). Lower body MA responded similarly to all tasks in both age groups. Disrupting sitting with walking produced the largest increase in EE and MA compared to other SB alternatives in both age groups. These results are important considering the wide use of SB alternatives by researchers and public health practitioners.

Health-Related Quality of Life and Sociodemographic Characteristics as Prognostic Indicators of Long-term Survival in Disease-Free Cervical Cancer Survivors.

OBJECTIVES: Health-related quality-of-life (HRQOL) issues of cancer patients are considered an important clinical outcome. We aimed to investigate the prognostic value of HRQOL on long-term survival outcomes in disease-free cervical cancer survivors (CCSs). METHODS: The study sample consisted of 860 disease-free CCSs from 6 Korean cancer hospitals recruited for HRQOL survey during 2005 (median time from diagnosis, 5.9 years). Health-related quality-of-life measures included the European Organization for Research and Treatment of Cancer QLQ-C30 and its Cervical Cancer Module (CX24). Survival data were retrieved from the Korean Statistical Office after 6 years from the survey. Health-related quality-of-life domains along with sociodemographic and clinicopathologic variables were analyzed as prognostic factors for survival from the date of survey. RESULTS: During the median follow-up period of 6.3 years after the survey, 30 (3.5%) patients died from all causes. Age, time since diagnosis, and physical activity were independent prognostic factors, which constituted the baseline model along with cancer stage. When HRQOL domains were tested separately against the baseline model, functional scales (physical, role, social, and emotional functioning), global health status, symptom scales (pain and appetite loss), and cervical cancer module items (body image, sexual inactivity, and sexual worry) were significantly associated with survival (P < 0.05). CONCLUSIONS: These findings suggest that, in addition to well-known prognostic factors, including age, time since diagnosis, and physical activity, HRQOL scores obtained from disease-free CCSs are associated with survival.

Efficacy of a training program for long-term disease- free cancer survivors as health partners: a randomized controlled trial in Korea.

BACKGROUND: To determine whether the Health Partner Program is effective in training long-term cancer survivors to be health coaches. MATERIALS AND METHODS: We randomly assigned cancer survivors who were selected through a rigorous screening process to either the Health Partner Program or the waiting-list control group. The program consisted of 8 weeks of training in health management, leadership, and coaching. At baseline, 8, and 16 weeks, we measured primary outcomes using the Seven Habit Profile (SHP), the Korean Leadership Coaching Competency Inventory (KCCI), Ed Diner's Satisfaction with Life Scale (SWLS), and the Posttraumatic Growth inventory (PTGI) and secondary outcomes using the Hospital Anxiety and Depression Scale (HADS), the Impact of Event Scale-Revised (IES-R), and the Medical Outcomes Study (MOS) short form 36-item questionnaire (SF- 36). RESULTS: We recruited 70 subjects and randomly assigned 34 to the intervention group. The Sharpen the Saw habit of the SHP increased significantly more in intervention group than in the control group (p = 0.049), as did most PTGI factors. The intervention group also showed a significantly greater enhancement of vitality (p = 0.015) and mental health (p = 0.049) SF-36 scores but no improvement in KCCI, SWLS, HADS, or IES-R scores. The intervention group also showed a greater clinically meaningful improvement in the "Think Win-Win" of SHP (p = 0.043) and in the personal strength score (p = 0.025) and total score (p = 0.015) of the PTGI. CONCLUSIONS: Long-term cancer survivors can benefit from the Health Partner Program to become health coaches.

How low is low enough? Evaluation of various risk-assessment models for lymph node metastasis in endometrial cancer: a Korean multicenter study.

OBJECTIVE: The aim of this study was to identify a standard for the evaluation of future models for prediction of lymph node metastasis in endometrial cancer through estimation of performance of well-known surgicopathological models. METHODS: Using the medical records of 947 patients with endometrial cancer who underwent surgical management with lymphadenectomy, we retrospectively assessed the predictive performances of nodal metastasis of currently available models. RESULTS: WE EVALUATED THREE MODELS INCLUDED: 1) a model modified from the Gynecologic Oncology Group (GOG) pilot study; 2) one from the GOG-33 data; and 3) one from Mayo Clinic data. The three models showed similar negative predictive values ranging from 97.1% to 97.4%. Using Bayes' theorem, this can be translated into 2% of negative post-test probability when 10% of prevalence of lymph node metastasis was assumed. In addition, although the negative predictive value was similar among these models, the proportion that was classified as low-risk was significantly different between the studies (56.4%, 44.8%, and 30.5%, respectively; p<0.001). CONCLUSION: The current study suggests that a false negativity of 2% or less should be a goal for determining clinical usefulness of preoperative or intraoperative prediction models for low-risk of nodal metastasis.

A profile of support group use and need among middle-aged and older adults with multiple sclerosis.

This study compared middle-aged and older adults with multiple sclerosis (MS, N = 1,275) according to their use of support groups and identified factors associated with perceived need. Over 64.6% (n = 824) of participants had attended a MS support group meeting at least once. Individuals who had never attended a group were more likely to reside in urban or suburban communities, report lower symptom interference, and fewer activity limitations. Women, individuals without a helper, and people with greater symptom interference were more likely to perceive a need for a support group. Findings raise questions for professionals involved in developing and implementing multiple sclerosis support groups.

Use of physical therapy services among middle-aged and older adults with multiple sclerosis.

BACKGROUND: There is limited understanding of the utilization of and perceived need for physical therapy services among middle-aged and older adults with multiple sclerosis (MS). The resulting knowledge gap compromises efforts for physical therapy service planning for this population. OBJECTIVE: The purpose of this study was to examine the use of and need for physical therapy services in a sample of adults with MS living in the Midwestern United States. DESIGN: This was a cross-sectional, descriptive study. METHODS: Data from telephone interviews with 1,065 people with MS, aged 45 to 90 years, were used for the study. A multinomial regression model was used to determine factors associated with use of physical therapy services (never, within the past year, more than a year ago). Logistic regression analysis examined factors associated with unmet needs for these services. RESULTS: Thirty-six percent of the sample reported never using physical therapy services, 33% reported using physical therapy services within the past year, and 31% reported using physical therapy services more than a year prior to the interview. Factors associated with recent use of physical therapy services included living in an urban or suburban community, deteriorating MS status, experiencing problems with spasticity (ie, hypertonicity), having difficulty moving inside the house, being hospitalized in the past 6 months, and seeing a family physician. These same factors were associated with unmet needs. Limitations Physical therapy service use was self-reported. Data were collected in 5 Midwestern states from people 45 years of age or older, which may limit generalizability. CONCLUSIONS: Factors associated with use of and need for physical therapy services reflect issues of access (geographical, referrals), MS status, and mobility difficulties.

Tumour perfusion assessment during regional hyperthermia treatment: comparison of temperature probe measurement with H(2)(15)O-PET perfusion.

PURPOSE: Hyperthermia treatment might increase tumour oxygenation and perfusion, as has been reported for experimental tumours. The present study was performed to investigate this hypothesis in patients undergoing regional hyperthermia treatment. METHODS: Thirteen patients with primary or recurrent pelvic tumours were included in this study. Prior to and up to one hour after regional hyperthermia, perfusion was quantitatively determined by H(2)(15)O-PET. The fused CT-PET images were used to extract tumour time-activity curves and to identify the catheter position. Perfusion was calculated from the total tumour time-activity curves and for the time-activity curves at the catheter site. Additionally, perfusion was calculated from the temperature-time curves measured using temperature probes. RESULTS: Perfusion values calculated using H(2)(15)O-PET and those deduced from temperature probe measurements are significantly correlated with a correlation coefficient, R = 0.21. The perfusion values deduced from the temperature measured in a body cavity do not provide information about average tumour perfusion. Perfusion values deduced from the temperature are overestimated for very poorly perfused tissues and underestimated for highly perfused tissues. CONCLUSIONS: Temperature measurement during hyperthermia may allow only determination of intermediate perfusion values.