Self performed treatment in female cancer survivors with secondary lymphedema

Background and aim: Many female cancer survivors who suffer from the consequences of secondary lymphedema experience physical, physiological and social limitations. Many studies have been made of some elements of self-care in the management of lymphedema but there are few if any studies of all of the potential elements that self-care might consist of. Therefore the overall aim of this study was to identify and then explore as many of the different elements of self-care as possible that are applicable in dealing with secondary lymphedema in female cancer survivors. Methods: In study I, a cohort of women (n=786) treated with radiotherapy after gynecological cancer treatment answered a study-specific questionnaire. In study II women (n=8) were interviewed about self-care. Study III was a cross-sectional study (n=83) and the women answered a study-specific questionnaire. The same women were included in study IV, a clinical controlled intervention (n=88). The women answered a lymphedema study-specific questionnaire and a questionnaire on daily function. The women were also measured for the outcome limb volume, joint movement and BMI. Results: In study I, overall quality of life was significantly lower among women with LLL, with a RR 1.4, 95 % CI 1.2-1.7. The women reported that LLL had a negative impact on several daily activities. In study II self-care as practiced by these women consisted of elements that were physical, physiological and social. The emerging themes were: Acceptance, Recovery, Physical activity, Manageability, Obstacles, Social self-care, Manual self-treatment and Ergonomics. In study III, women with low well-being (OR= 4.5, CI 1.7-11.7) not accepting their body (OR= 3.9, CI 1.0-15.3) and ethnicities other than Swedish (OR= 5.3, CI 1.1-25.6) were observed to engage less in self-care of their lymphedema. Not accepting lymphedema was a risk to think that self-care did not help (OR= 5.9, CI 1.6-22.4). Sleep quality and self-care were correlated (r = 0.2, p = 0.04). In study IV, there was a higher percent of women who participated in water exercise and who thus reduced their arm limb volume (p=0.029), BMI (p=0.047) and self-reported swelling (p= 0.031). Women in land exercise improved their DASH scores (p=0.047) and outer rotation in the shoulder (p= 0.001). Conclusions: Lower Limb Lymphedema has a negative impact on quality of life, affects sleep and daily life activities, yet few women seek professional help. Self-care involves physical, psychological and social aspects and acceptance may have an influence on if and how the women do self-care. Almost 60 % of the women performed self-care every day despite the fact that 50 % of them reported that self-care did not help. Furthermore, at risk of not taking care of themselves with self-care were women with low well-being, women who reported difficulties in accepting their body and women with ethnicity other than Swedish. We found that a greater percent of women decreased their secondary lymphedema volume, BMI and frequency of swelling after engaging in water exercise than in land exercise. In the land group, improvements were shown in daily shoulder function, and in outer rotation of the shoulder. Implications: It is important to actively ask patients at risk for lower limb lymphedema about early signs of lymphedema and then help them to get early treatment. We could do more to empower the patients to see the good things within themselves and have an open dialogue about obstacles, frustration and guilt about not doing enough in the field of self-care. Social support can increase the patients’ self-esteem. Low well-being, negative body-image and ethnicity other than Swedish can be factors worth registering in medical records so they can be taken into consideration in helping vulnerable individuals adjust to self-care. Water-based exercise can be appropriate treatment influencing and improving limb volume and BMI. Land-based exercise can be appropriate treatment resulting in improved shoulder function in these patients. Adequate evidence-based programs are needed

Levels of human proteins in plasma associated with acute paediatric malaria

Background: The intimate interaction between the pathophysiology of the human host and the biology of the Plasmodium falciparum parasite results in a wide spectrum of disease outcomes in malaria. Development of severe disease is associated with a progressively augmented imbalance in pro- and anti-inflammatory responses to high parasite loads and sequestration of parasitized erythrocytes. Although these phenomena collectively constitute common denominators for the wide variety of discrete severe malaria manifestations, the mechanistic rationales behind discrepancies in outcome are poorly understood. Exploration of the human pathophysiological response by variations in protein profiles in plasma presents an excellent opportunity to increase the understanding. This is ultimately required for better prediction, prevention and treatment of malaria, which is essential for ongoing elimination and eradication efforts. Results: An affinity proteomics approach was used to analyse 541 paediatric plasma samples collected from community controls and patients with mild or severe malaria in Rwanda. Protein profiles were generated with an antibody-based suspension bead array containing 255 antibodies targetting 115 human proteins. Here, 57 proteins were identified with significantly altered levels (adjusted p-values < 0.001) in patients with malaria compared to controls. From these, the 27 most significant proteins (adjusted p-values < 10−14) were selected for a stringent analysis approach. Here, 24 proteins showed elevated levels in malaria patients and included proteins involved in acute inflammatory response as well as cell adhesion. The remaining three proteins, also implicated in immune regulation and cellular adhesivity, displayed lower abundance in malaria patients. In addition, 37 proteins (adjusted p-values < 0.05) were identified with increased levels in patients with severe compared to mild malaria. This set includes, proteins involved in tissue remodelling and erythrocyte membrane proteins. Collectively, this approach has been successfully used to identify proteins both with known and unknown association with different stages of malaria. Conclusion: In this study, a high-throughput affinity proteomics approach was used to find protein profiles in plasma linked to P. falciparum infection and malaria disease progression. The proteins presented herein are mainly involved in inflammatory response, cellular adhesion and as constituents of erythrocyte membrane. These findings have a great potential to provide increased conceptual understanding of host-parasite interaction and malaria pathogenesis

Systematic Monitoring of Cognition for Adults With Cerebral Palsy-The Rationale Behind the Development of the CPCog-Adult Follow-Up Protocol

Cerebral palsy (CP) comprises a heterogeneous group of conditions recognized by disturbances of movement and posture and is caused by a non-progressive injury to the developing brain. Birth prevalence of CP is about 2-2.5 per 1,000 live births. Although the motor impairment is the hallmark of the diagnosis, individuals with CP often have other impairments, including cognitive ones. Cognitive impairments may affect communication, education, vocational opportunities, participation, and mental health. For many years, CP has been considered a "childhood disability," but the challenges continue through the life course, and health issues may worsen and new challenges may arise with age. This is particularly true for cognitive impairments, which may become more pronounced as the demands of life increase. For individuals with CP, there is no one-to-one correlation between cognition and functioning in other areas, and therefore, cognition must be individually assessed to determine what targeted interventions might be beneficial. To facilitate this for children with CP, a systematic follow-up protocol of cognition, the CPCog, has been implemented in Norway and Sweden. However, no such protocol currently exists for adults with CP. Such discontinuity in healthcare services that results from lack of follow-up of cognitive functioning and subsequent needs for adjustments and interventions makes transition from pediatric to adult healthcare services challenging. As a result, a protocol for the surveillance of cognition in adults with CP, the CPCog-Adult, has been developed. It includes assessment of verbal skills, non-verbal reasoning, visual-spatial perception, and executive functioning. It is recommended to perform these assessments at least once in young adulthood and once in the mid-fifties. This report describes the process of developing the CPCog-Adult, which has a three-fold purpose: (1) to provide equal access to healthcare services to enable the detection of cognitive impairments; (2) to provide interventions that increase educational and vocational participation, enhance quality of life, and prevent secondary impairments; and (3) to collect systematic data for research purposes. The consent-based registration of data in the well-established Swedish and Norwegian national CP registries will secure longitudinal data from childhood into adulthood

Olfactory fMRI : implications of stimulation length and repetition time

Studying olfaction with functional Magnetic Resonance imaging (fMRI) poses various methodological challenges. This study aimed to investigate the effects of stimulation length and repetition time (TR) on the activation pattern of four olfactory brain regions: the anterior and the posterior piriform cortex, the orbitofrontal cortex and the insula. 22 healthy participants with normal olfaction were examined with fMRI, with two stimulation lengths (6 seconds and 15 seconds) and two TRs (0.901 seconds and 1.34 seconds). Data were analyzed using General Linear Model (GLM), Tensorial Independent Component Analysis (TICA) and by plotting the event related time course of brain activation in the four olfactory regions of interest. The statistical analysis of the time courses revealed that short TR was associated with more pronounced signal increase and short stimulation was associated with shorter time to peak signal. Additionally, both long stimulation and short TR were associated with oscillatory time courses, whereas both short stimulation and short TR resulted in more typical time courses. GLM analysis showed that the combination of short stimulation and short TR could result in visually larger activation within these olfactory areas. TICA validated that the tested paradigm was spatially and temporally associated with a functionally connected network that included all four olfactory regions. In conclusion, the combination of short stimulation and short TR is associated with higher signal increase and shorter time to peak, making it more amenable to standard GLM-type analyses than long stimulation and long TR, and it should, thus, be preferable for olfactory fMRI

Clinical manifestations of intermediate allele carriers in Huntington disease

Objective: There is controversy about the clinical consequences of intermediate alleles (IAs) in Huntington disease (HD). The main objective of this study was to establish the clinical manifestations of IA carriers for a prospective, international, European HD registry. Methods: We assessed a cohort of participants at risk with <36 CAG repeats of the huntingtin (HTT) gene. Outcome measures were the Unified Huntington's Disease Rating Scale (UHDRS) motor, cognitive, and behavior domains, Total Functional Capacity (TFC), and quality of life (Short Form-36 [SF-36]). This cohort was subdivided into IA carriers (27-35 CAG) and controls (<27 CAG) and younger vs older participants. IA carriers and controls were compared for sociodemographic, environmental, and outcome measures. We used regression analysis to estimate the association of age and CAG repeats on the UHDRS scores. Results: Of 12,190 participants, 657 (5.38%) with <36 CAG repeats were identified: 76 IA carriers (11.56%) and 581 controls (88.44%). After correcting for multiple comparisons, at baseline, we found no significant differences between IA carriers and controls for total UHDRS motor, SF-36, behavioral, cognitive, or TFC scores. However, older participants with IAs had higher chorea scores compared to controls (p 0.001). Linear regression analysis showed that aging was the most contributing factor to increased UHDRS motor scores (p 0.002). On the other hand, 1-year follow-up data analysis showed IA carriers had greater cognitive decline compared to controls (p 0.002). Conclusions: Although aging worsened the UHDRS scores independently of the genetic status, IAs might confer a late-onset abnormal motor and cognitive phenotype. These results might have important implications for genetic counseling. ClinicalTrials.gov identifier: NCT01590589