Exploring the information practices of people with end stage kidney disease

This small exploratory study sought to understand how people with End Stage Kidney Disease (ESKD) experience the information environment and what information practices they employ in order to inform the decisions they make in relation to treatment and care. Using a constructivist methodology, in-depth interviews were conducted with five people who were receiving haemodialysis in two small satellite dialysis units located in regional and rural communities in New South Wales, Australia. Thematic analysis revealed two types of patients. The first type appears to adopt a received view of information, who do not question their condition; and passively accept information. In the other type, patients were found to be engaged; they actively identified their information needs and quickly learned what that they needed to ask and who to ask. Knowing the information practices of people with ESKD is useful for nephrology nurses when providing patient education.

Examining the health related quality of life of people with end stage kidney disease living in Hanoi, Vietnam

Background: The prevalence of end-stage kidney disease (ESKD) patients is increasing in Vietnam; however, the impact of ESKD and its treatment on a person’s quality of life (QOL) is not well understood. Objective: This research sought to examine the association between monthly income, comorbidity, length of time on dialysis, social support and health-related quality of life (HRQOL) among Vietnamese ESKD patients. Method: Using a descriptive design, 95 patients who were receiving haemodialysis (HD) and peritoneal dialysis (PD) from one hospital in Hanoi, were conveniently sampled. Results: ESKD patients reported having a moderate level of HRQOL. Factors associated with QOL were social support (r= .268, p<.05), comorbid health conditions (r= –.185, p<.05), and length of time on dialysis (r= .182, p<.05). However, monthly income was not significantly related to HRQOL (p>.05). Conclusion: The results seem to indicate that ESKD patients in Vietnam have a high level of support from family members, friends and significant others. There was also a negative impact of comorbid conditions on the QOL of these patients. Based on the results of this study, nurses ought to develop nursing interventions which will lead to a better QOL for patients, and further research into the QOL for ESKD patients in Vietnam is warranted.

A longitudinal study of health-related quality of life, fatigue and physical activity in chronic kidney disease patients

This study assessed the health-related quality of life (HRQoL), fatigue and physical activity levels of 28 persons with chronic kidney disease (CKD) on initial administration of an erythropoietin stimulating agent, and at 3 months, 6 months and 12 months. The sample comprised of 15 females and 13 males whose ages ranged from 31 to 84 years. Physical activity was measured using the Human Activity Profile (HAP): Self-care, Personal/Household work, Entertainment/Social, Independent exercise. Quality of life was measured using the SF-36 which gives scores on physical health (physical functioning, role-physical, bodily pain and general health) and mental health (vitality, social functioning, role-emotional and emotional well-being). Fatigue was measured by the Fatigue Severity Scale (FSS). Across all time points the renal sample engaged in considerably less HAP personal/household work activities and entertainment/social activities compared to healthy adults. The normative sample engaged in three times more independent/exercise activities compared to renal patients. One-way Repeated measures ANOVAs indicated a significant change over time for SF-36 scales of role physical, vitality, emotional well-being and overall mental health. There was a significant difference in fatigue levels over time [F(3,11) = 3.78, p<.05]. Fatigue was highest at baseline and lowest at 6 months. The more breathlessness the CKD patient reported, the fewer activities undertaken and the greater the reported level of fatigue. There were no significant age differences over time for fatigue or physical activity. Age differences were only found for SF-36 mental health at 3 months (t=-2.41, df=14, p<.05). Those younger than 65 years had lower emotional well-being compared to those aged over 65. Males had poorer physical health compared to females at 12 months. There were no significant gender differences on mental health at any time point. In the management of chronic kidney disease, early detection of a person’s inability to engage in routine activities due to fatigue is necessary. Early detection would enable timely interventions to optimise HRQoL and independent exercise.

Nutritional status in Parkinson's disease patients undergoing deep-brain stimulation surgery : a pilot study

People with Parkinson’s disease (PD) are at higher risk of malnutrition due to PD symptoms and pharmacotherapy side effects. Poorer outcomes are associated with higher amounts of weight loss (>5%) and lower levels of fat free mass. When pharmacotherapy is no longer effective for symptom control, deep-brain stimulation (DBS) surgery may be considered. People with PD scheduled for DBS surgery were recruited from a Brisbane neurological clinic (n=11 out of 16). The Scale for Outcomes of Parkinson’s disease –Autonomic (SCOPA-AUT), Modified Constipation Assessment Scale (MCAS), and a 3-day food diary were mailed to participants’ homes for completion prior to hospital admission. During admission, the Patient-Generated Subjective Global Assessment (PG-SGA), weight, height and body composition were assessed. Mean(±s.d.) PD duration from diagnosis and time since occurrence of PD symptoms was 9.0(±8.0) and 12(±8.8) years, respectively. Five participants reported unintentional weight loss (average loss of 15.6%). PD duration but not years since symptom onset significantly predicted PG-SGA scores (β=4.2, t(8)=2.7, p<.05). Both were positively correlated with PG-SGA score (r = .667, r=.587). On average, participants classified as well-nourished (SGA-A) (n=4) were younger, had shorter disease durations, lower PG-SGA scores, higher body mass (BMI) and fat free mass (FFMI) indices when compared to malnourished participants (SGA-B) (n=7). They also reported fewer non-motor symptoms on the SCOPA-AUT and MCAS. Three participants had previously received dietetic advice but not in relation to PD. These findings demonstrate that malnutrition remains unrecognised and untreated in this group despite unintentional weight loss and a high prevalence of malnutrition.

Prevalence of malnutrition in community-dwelling adults with Parkinson's disease

People with Parkinson’s disease (PD) have been reported to be at higher risk of malnutrition than an age-matched population due to PD motor and non-motor symptoms and pharmacotherapy side effects. The prevalence of malnutrition in PD has yet to be well-defined. Community-dwelling people with PD, aged > 18 years, were recruited (n = 97, 61 M, 36 F). The Patient-Generated Subjective Global Assessment (PGSGA) was used to assess nutritional status, the Parkinson’s Disease Questionnaire (PDQ-39) was used to assess quality of life, and the Beck’s Depression Inventory (BDI) was used to measure depression. Levodopa equivalent doses (LEDs) were calculated based on reported Parkinson’s disease medication. Weight, height, mid-arm circumference (MAC) and calf circumference were measured. Cognitive function was measured using the Addenbrooke’s Cognitive Examination. Average age was 70.0 (9.1, 35–92) years. Based on SGA, 16 (16.5%) were moderately malnourished (SGA B) while none were severely malnourished (SGA C). The well-nourished participants (SGA A) had a better quality of life, t(90) = −2.28, p < 0.05, and reported less depressive symptoms, t(94)= −2.68, p < 0.05 than malnourished participants. Age, years since diagnosis, cognitive function and LEDs did not signifi cantly differ between the groups. The well-nourished participants had lower PG-SGA scores, t(95) = −5.66, p = 0.00, higher BMIs, t(95) = 3.44, p < 0.05, larger MACs, t(95) = 3.54, p < 0.05 and larger calf circumferences, t(95) = 2.29, p < 0.05 than malnourished participants. Prevalence of malnutrition in community-dwelling adults with PD in this study is comparable to that in other studies with community-dwelling adults without PD and is higher than other PD studies where a nutritional status assessment tool was used. Further research is required to understand the primary risk factors for malnutrition in this group.

Risk factors for malnutrition in community-dwelling people with Parkinson’s disease

In the elderly, the risks for protein-energy malnutrition from older age, dementia, depression and living alone have been well-documented. Other risk factors including anorexia, gastrointestinal dysfunction, loss of olfactory and taste senses and early satiety have also been suggested to contribute to poor nutritional status. In Parkinson’s disease (PD), it has been suggested that the disease symptoms may predispose people with PD to malnutrition. However, the risks for malnutrition in this population are not well-understood. The current study’s aim was to determine malnutrition risk factors in community-dwelling adults with PD. Nutritional status was assessed using the Patient-Generated Subjective Global Assessment (PG-SGA). Data about age, time since diagnosis, medications and living situation were collected. Levodopa equivalent doses (LDED) and LDED per kg body weight (mg/kg) were calculated. Depression and anxiety were measured using the Beck’s Depression Inventory (BDI) and Spielberger Trait Anxiety questionnaire, respectively. Cognitive function was assessed using the Addenbrooke’s Cognitive Examination (ACE-R). Non-motor symptoms were assessed using the Scales for Outcomes in Parkinson's disease-Autonomic (SCOPA-AUT) and Modified Constipation Assessment Scale (MCAS). A total of 125 community-dwelling people with PD were included, average age of 70.2±9.3(35-92) years and average time since diagnosis of 7.3±5.9(0–31) years. Average body mass index (BMI) was 26.0±5.5kg/m2. Of these, 15% (n=19) were malnourished (SGA-B). Multivariate logistic regression analysis revealed that older age (OR=1.16, CI=1.02-1.31), more depressive symptoms (OR=1.26, CI=1.07-1.48), lower levels of anxiety (OR=.90, CI=.82-.99), and higher LDED per kg body weight (OR=1.57, CI=1.14-2.15) significantly increased malnutrition risk. Cognitive function, living situation, number of prescription medications, LDED, years since diagnosis and the severity of non-motor symptoms did not significantly influence malnutrition risk. Malnutrition results in poorer health outcomes. Proactively addressing the risk factors can help prevent declines in nutritional status. In the current study, older people with PD with depression and greater amounts of levodopa per body weight were at increased malnutrition risk.

Malnutrition in a sample of community-dwelling people with Parkinson’s disease

Objective: Malnutrition results in poor health outcomes, and people with Parkinson’s disease may be more at risk of malnutrition. However, the prevalence of malnutrition in Parkinson’s disease is not yet well defined. The aim of this study is to provide an estimate of the extent of malnutrition in community-dwelling people with Parkinson’s disease. Methods: This is a cross-sectional study of people with Parkinson’s disease residing within a 2 hour driving radius of Brisbane, Australia. The Subjective Global Assessment (SGA) and scored Patient Generated Subjective Global Assessment (PG-SGA) were used to assess nutritional status. Body weight, standing or knee height, mid-arm circumference and waist circumference were measured. Results: Nineteen (15%) of the participants were moderately malnourished (SGA-B). The median PG-SGA score of the SGA-B group was 8 (4 – 15), significantly higher than the SGA-A group, U=1860.5,p<.05. The symptoms most influencing intake were loss of appetite, constipation, early satiety and problems swallowing. Conclusions: As with other populations, malnutrition remains under-recognised and undiagnosed in people with Parkinson’s disease. Regular screening of nutritional status in people with Parkinson’s disease by health professionals with whom they have regular contact should occur to identify those who may benefit from further nutrition assessment and intervention.

Nutritional status in Parkinson’s disease patients undergoing deep brain stimulation surgery : a pilot study

Objectives: People with Parkinson’s disease (PD) are at higher risk of malnutrition due to PD symptoms and pharmacotherapy side effects. When pharmacotherapy is no longer effective for symptom control, deep-brain stimulation (DBS) surgery may be considered. The aim of this study was to assess the nutritional status of people with PD who may be at higher risk of malnutrition related to unsatisfactory symptom management with optimised medical therapy. Design: This was an observational study using a convenience sample. Setting: Participants were seen during their hospital admission for their deep brain stimulation surgery. Participants: People with PD scheduled for DBS surgery were recruited from a Brisbane neurological clinic (n=15). Measurements: The Patient-Generated Subjective Global Assessment (PG-SGA), weight, height and body composition were assessed to determine nutritional status. Results: Six participants (40%) were classified as moderately malnourished (SGA-B). Eight participants (53%) reported previous unintentional weight loss (average loss of 13.3%). On average, participants classified as well-nourished (SGA-A) were younger, had shorter disease durations, lower PG-SGA scores, higher body mass (BMI) and fat free mass indices (FFMI) when compared to malnourished participants (SGA-B). Five participants had previously received dietetic advice but only one in relation to unintentional weight loss. Conclusion: Malnutrition remains unrecognised and untreated in this group despite unintentional weight loss and presence of nutrition impact symptoms. Improving nutritional status prior to surgery may improve surgical outcomes.

Comparison of two methods to assess malnutrition in community-dwelling people with Parkinson's disease

Nutritional status in people with Parkinson’s disease (PD) has previously been assessed in a number of ways including BMI, % weight loss and the Mini-Nutritional Assessment(MNA). The symptoms of the disease and the side effects of medication used to manage them result in a number of nutrition impact symptoms that can negatively influence intake. These include chewing and swallowing difficulties, lack of appetite, nausea, and taste and smell changes, among others. Community-dwelling people with PD, aged >18 years, were recruited (n=97, 61 M, 36 F). The Patient-Generated Subjective Global Assessment(PG-SGA) and (MNA) were used to assess nutritional status. Weight, height, mid-arm circumference(MAC) and calf circumference were measured. Based on SGA, 16(16.5%) were moderately malnourished (SGA B) while none were severely malnourished (SGA C). The MNA identified 2(2.0%) as malnourished and 22(22.7%) as at risk of malnutrition. Mean MNA scores were different between the three groups,F(2,37)=7.30,p<.05 but not different between SGA B (21.0(2.9)) and MNA at risk (21.8(1.4)) participants. MAC and calf circumference were also different between the three groups,F(2,37)=5.51,p<.05 and F(2,37)=15.33,p<.05 but not between the SGA B (26.2(4.2), 33.3(2.8)) and MNA at risk (28.4(5.6), 36.4(4.7)) participants. The MNA results are similar to other PD studies using MNA where prevalence of malnutrition was between 0-2% with 20-33% at risk of malnutrition. In this population, the PG-SGA may be more sensitive to assessing malnutrition where nutrition impact symptoms influence intake. With society’s increasing body size, it might also be more appropriate as it does not rely on MAC and calf circumference measures.

Cost-effectiveness analysis of a kidney and cardiovascular disease treatment program in an Australian Aboriginal population

The objective of the study was to assess, from a health service perspective, whether a systematic program to modify kidney and cardiovascular disease reduced the costs of treating end-stage kidney failure. The participants in the study were 1,800 aboriginal adults with hypertension, diabetes with microalbuminuria or overt albuminuria, and overt albuminuria, living on two islands in the Northern Territory of Australia during 1995 to 2000. Perindopril was the primary treatment agent, and other medications were also used to control blood pressure. Control of glucose and lipid levels were attempted, and health education was offered. Evaluation of program resource use and costs for follow-up periods was done at 3 and 4.7 years. On an intention-to-treat basis, the number of dialysis starts and dialysis-years avoided were estimated by comparing the fate of the treatment group with that of historical control subjects, matched for disease severity, who were followed in the before the treatment program began. For the first three years, an estimated 11.6 person-years of dialysis were avoided, and over 4.7 years, 27.7 person-years of dialysis were avoided. The net cost of the program was 1,210 dollars more per person per year than status quo care, and dialyses avoided gave net savings of 1.0 million dollars at 3 years and 3.4 million dollars at 4.6 years. The treatment program provided significant health benefit and impressive cost savings in dialysis avoided.

An extended theory of planned behavior intervention for older adults With Type 2 diabetes and cardiovascular disease

A randomized controlled trial evaluated the effectiveness of a 4-wk extended theory of planned behavior (TPB) intervention to promote regular physical activity and healthy eating among older adults diagnosed with Type 2 diabetes or cardiovascular disease (N = 183). Participants completed TPB measures of attitude, subjective norm, perceived behavioral control, and intention, as well as planning and behavior, at preintervention and 1 wk and 6 wk postintervention for each behavior. No significant time-by-condition effects emerged for healthy eating. For physical activity, significant time-by-condition effects were found for behavior, intention, planning, perceived behavioral control, and subjective norm. In particular, compared with control participants, the intervention group showed short-term improvements in physical activity and planning, with further analyses indicating that the effect of the intervention on behavior was mediated by planning. The results indicate that TPB-based interventions including planning strategies may encourage physical activity among older people with diabetes and cardiovascular disease.

Qualitative study of adversity activated development and resilience in adolescents and young adults with congenital heart disease and their parents

What is it like to have a medical condition that few people have ever heard about? How does it feel to have to question whether daily physical activities are dangerous for you, whilst you watch your friends enjoy those activities without a care? Can you imagine that you need to have a complicated heart surgery, with risks such as paralysis or death? Or even imagine facing the painful recovery period and scars after such a surgery? Then imagine that you are a child or teenager dealing with this medical condition when all your friends are simply occupied with school and normal life. Now consider that surgery has been undertaken to extend your lifespan, but the operation is so new that the long-term outcomes are just not known? All you really know is that you might have ‘surgical repairs’ to your heart and symptoms may be relieved or managed by medications or cardiac devices, but you are never going to be cured. What if you had already experienced painful, frightening, lonely and tedious hospitalisations and you were forced to put your life on hold to re-enter that situation, time and time again. This may be your life, as a Congenital Heart Disease or CHD patient. How do such patients cope and in many cases even thrive? This chapter will review current international literature regarding the medical and personal impact of CHD. Our qualitative study of the perspectives of young CHD patients and their parents contributes to the Australian story of CHD, as well as highlighting the potential for CHD related adversity to promote personal development.

Synchrony of planting and proportions of susceptible varieties affect rice tungro disease epidemics in the Philippines.

Surveys were conducted in the Philippines from 1995 to 1997 to examine relationships between production environment variables (agroecosystem, synchrony of planting, and varieties planted) and the occurrence of rice tungro disease epidemics using correspondence analyses. The sites covered were Isabela, Nueva Ecija, North Cotabato, and Bohol provinces as well as Bicol region. Tungro disease incidence in farmers’ fields was assessed visually based on typical symptoms. In addition, leaf samples were collected from each field and indexed serologically by enzyme-linked immunosorbent assay for the presence of Rice tungro bacilliform (RTBV) and Rice tungro spherical (RTSV) viruses. Thus, relationships between the production environment variables and four disease variables — visual incidence and double RTBV and RTSV, single RTSV, and single RTBV infections — were examined. A higher association was observed between site and varieties planted as well as site and synchrony of planting than between site and agroecosystem or site and disease variables (visual incidence, double RTBV and RTSV and single RTSV infections). Disease variables depended on both varieties planted and synchrony of planting and correspondence analysis revealed that the low disease incidence in Nueva Ecija was associated with synchronous planting while the high disease incidence in Isabela was associated with the planting of susceptible varieties and asynchronous planting. Such findings suggest that the relationship between the last two factors at a given site is critical to predicting tungro occurrence. Moreover, correspondence analysis of the relationship among disease variables revealed that tungro incidence is associated with not only double RTBV and RTSV infections but also single RTSV infections. Implications of these results on tungro epidemiology and management are discussed.