Need For Caregiver Assistance Research Articles

Impact of Chronic Graft-versus-Host Disease on Patient Employment, Income, and Informal Caregiver Burden: Findings From the Living With Chronic GVHD Patient Survey

Development of chronic graft-versus-host disease (GVHD) after allogeneic hematopoietic stem cell transplantation (HSCT) results in impaired physical function and quality of life. However, limited data exist regarding the employment and financial impact on patients and caregivers. The objective of this study was to describe the impact of chronic GVHD on patient employment, disability leave, income, reliance on caregivers, and effects on caregiver employment. The Living With Chronic GVHD Patient Survey was a cross-sectional online survey administered from May to August 2020 in the United States to adult HSCT survivors diagnosed with chronic GVHD within the past 5 years. Data on respondent demographics and disease characteristics and the effects of chronic GVHD on employment, income, and need for caregiver assistance were collected. Respondents were also asked to report on the impact of their chronic GVHD on their caregivers' employment. All data were summarized using descriptive statistics; no formal statistical comparisons were conducted. A total of 165 respondents completed the survey (median age, 57.0 years; 63.6% women; 83.0% White); respondents had been experiencing chronic GVHD for a median (range) of 4.5 (0.1-36.7) years, with a median (range of 0.5 (0-3.6) years from most recent transplant to chronic GVHD diagnosis. Among those employed full- or part-time at the time of their most recent transplant (n=80), 61.3% reported taking disability leave, 58.8% worked reduced hours, 27.5% took a less demanding job, and 33.8% left a job because of chronic GVHD. Additionally, 71.3% believed they had lost income due to chronic GVHD. Among all respondents, 72.1% reported receiving regular caregiver assistance. Respondents commonly reported employment changes among unpaid caregivers (34.5% reduced their working hours; 16.6% terminated a job). HSCT survivors who develop chronic GVHD are vulnerable to employment changes and financial hardship. This analysis highlights the need for effective therapies and improved symptom management to reduce the multifaceted burden of chronic GVHD on patients and their caregivers and ultimately improve long-term HSCT outcomes.

Understanding the impact of COVID‐19 pandemic on patients with Alzheimer’s disease and caregivers using online narratives on social media

BackgroundThe Covid‐19 pandemic has disproportionately impacted individuals with pre‐existing health conditions. This study aims to describe the challenges of people with Alzheimer’s disease (AD) and their caregivers experienced during the pandemic.MethodWe used the RLytics NLP (Natural Language Processing) platform to analyze key challenges and issues that were shared online over 47 social media sites by patients living with AD and caregivers during the COVID‐19 pandemic between January 2020 and January 2021.ResultA total of 3,422 narratives were analyzed and reported in aggregate categories, including extensive descriptions on the worsening of AD, difficulties in understanding and maintaining rules of masking and social distancing, limited opportunities of social interactions, reduced caregiver availability, and emotional disturbance or exacerbation with fear, anxiety, and loneliness (Table). Disease worsening manifested with or without COVID‐19 diagnosis, leading to increased reliance and need for caregiver assistance and declining patient wellbeing. The patient challenges were compounded by increased caregiver burden, expressed through the social media on disruptions to Work‐from‐Home routines and the need for additional caregiver support to sustain household income. The caregiver narratives revealed a range of challenges, including common issues of getting access to COVID‐19 vaccines and unique issues of having to reminding or assisting patients with handwashing, social distancing, or staying at home. Patient disease aggravation resulting from restrictive caregiver access to long term care facilities was frequently communicated online by the caregivers, highlighting increased caregiver emotional stress that led to anger, frustration, crying, loneliness, depression and emotional fatigue.ConclusionThis social media study using NLP uncovers a broad range of challenges experienced by patients with AD and the caregivers during the COVID‐19 pandemic. They appear to have suffered unique health, cognitive, social, emotional, interpersonal, and daily living burden, resulting in worsening of disease and declining wellbeing. The untoward consequences may well likely surpass the pandemic, leading to prolonged deleterious impact in patient and caregiver personal lives and deepened public health crisis with AD.

The Time Burden of Specialty Clinic Visits in Persons With Neurologic Disease: A Case for Universal Telemedicine Coverage.

Objective: Those with chronic neurologic disorders are often burdened not only by the condition itself but also an increased need for subspecialty medical care. This may require long distance travel, while even small distances can be a hardship secondary to impaired mobility and transportation. We sought to examine the burden of time associated with clinical visits for those with chronic neurologic disorders and their family/caregivers. These topics are discussed as an argument to support universal coverage for telemedicine in this population.Design: Cohort Study.Setting: Specialty clinic at community hospital.Participants: 208 unique patients with chronic neurologic disability at physical medicine and rehabilitation or neurourology clinic over a 3-month period.Main Outcome Measures: Patient survey on commute distance, time, difficulties, and need for caregiver assistance to attend visits.Results: Approximately 40% of patients were covered by Medicare. Many patients (42%) perceived it difficult to attend their clinic visit with transportation difficulties, commute time, and changes to their daily schedule being the most commonly cited reasons. Most patients (75%) lived within 25 miles of our clinics and experienced an average commute time of 79.4 min, though 10% required 3 h or more. Additional family/caregiver assistance was required for 76% of patients, which resulted in an inclusive average commute time of 138.2 min per patient.Conclusion: Chronically neurologically-disabled patients and their caregivers may be burdened by the commute to outpatient appointments. To minimize this burden, increased emphasis on telemedicine coverage for those with chronic neurologic disability should be considered by all payors.

Appraisals of robotic locomotor exoskeletons for gait: focus group insights from potential users with spinal cord injuries

Purpose: To describe appraisals of robotic exoskeletons for locomotion by potential users with spinal cord injuries, their perceptions of device benefits and limitations, and recommendations for manufacturers and therapists regarding device use.Materials and methods: We conducted focus groups at three regional rehabilitation hospitals and used thematic analysis to define themes.Results: Across four focus groups, 35 adults participated; they were predominantly middle-aged, male, and diverse in terms of race and ethnicity, well educated, and not working. Participants had been living with SCI an average of two decades. Most participants were aware of exoskeletons. Some were enthusiastic about the usability of the devices while others were more circumspect. They had many questions about device affordability and usability, and were discerning in their appraisal of benefits and suitability to their particular circumstances. They reflected on device cost, the need for caregiver assistance, use of hands, and environmental considerations. They weighed the functional benefits relative to the cost of preferred activities. Their recommendations focused on cost, battery life, and independent use.Conclusions: Potential users’ appraisals of mobility technology reflect a nuanced appreciation of device costs; functional, social, and psychological benefits; and limitations. Results provide guidance to therapists and manufacturers regarding device use.Implications for RehabilitationPotential users of robotic locomotor exoskeletons with spinal cord injuries appreciate the functional, social, and psychological benefits that these devices may offer.Their appraisals reflect nuanced consideration of device cost and features, and the suitability of the assistive technology to their circumstances.They recommend that manufacturers focus on reducing cost, extending battery life, and features that allow independent use.

Older Adult Factors Associated With Identified Need for Family Caregiver Assistance During Home Health Care

Family caregivers make important contributions to home health care for older adults, but knowledge of the specific roles they assume is lacking. We analyzed data from 1,758 community-dwelling Medicare beneficiaries aged 65+ receiving Medicare-funded home health care between 2011 and 2016, using linked National Health and Aging Trends Study and Outcomes and Assessment Information Set data. Most (86.7%) beneficiaries receiving home health care had an identified need for family caregiver assistance, and nearly 6 in 10 (57.9%) had identified need for caregiver assistance with five or more tasks. After examining significant associations between older adult characteristics and identified needs for caregiver assistance with specific tasks, we identified three profiles of older adults who demonstrate similar patterns of identified need for family caregiver assistance during home health. These profiles include: (1) older adults with greater functional impairment who more often had identified need for assistance with Instrumental Activities of Daily Living, advocacy, or Activities of Daily Living; (2) older adults with cognitive impairment who more often had identified need for assistance with medication administration or supervision; and (3) older adults with greater clinical severity who more often had identified need for assistance with medical procedures and equipment. Findings support calls to develop training interventions and strengthen the partnership between home health providers and family caregivers. These three profiles present a potential framework for the development of family caregiver training programs.

Impact on Caregivers of Patients with Myeloproliferative Neoplasms (MPNs) in the United States: Results from the Living with MPNs Survey

904 patients with MPNs aged 18-70 years in the US who completed the online Living with MPNs survey between April and November, 2016. The MPN Symptom Assessment Form Total Symptom Score was used to describe symptom burden. Patient-reported need for caregiver assistance and caregivers' employment change due to MPNs was reported.

Abstract 42: Validation of an Ordinal, 6-Item Functional Outcome Scale for Speech and Language Disability in Stroke: The Austin Speech Labs Communication Disability Scale

Introduction: Assessment of stroke outcomes specific to speech and language typically depends on lengthy batteries yielding a derived score that has little functional meaning to patients. Our aim was to develop a simple, highly reliable, ordinal outcome scale specific to language and communication disability. Methods: Modeled after the Rankin Scale, the Communication Disability Scale is a 6-item ordinal scale to assess degree of disability specifically related to communication deficits. Inter-rater reliability and criterion validity were tested on a cohort of 79 stroke patients with communication /speech deficits in an outpatient intensive speech therapy setting. Speech therapists independently assessed the patients. 0 - No speech or language deficits. 1 - Minor language deficits, without communication limitations. 2 - Language deficits causing limitations on communication, but not on ADLs. 3 - Limitations in ADLs caused or exacerbated by communication deficits*. 4 - Requires listener assistance and inference for most communications of basic needs*. 5 - No effective communication*. *Needs caregiver assistance Results: Inter-rater reliability of the Communication Disability Scale scores (CDS) for all subjects (n=79) yielded an intra-class correlation of 0.823. The kappa statistic for agreement was 0.792. Comparison to a standardized language assessment, the Western Aphasia Battery Aphasia Quotient (WAB-AQ) (n=71) showed a strong correlation on Spearman rank rho = -0.815. When CDS and WAB-AQ were dichotomized as good (0-2, does not require caregiver assistance for communication needs) v bad, kappa was 0.6223 (p < 0.001). Conclusion: The Austin Speech Labs Communication Disability Scale has high inter-rater reliability and is highly correlated with a standard Aphasia Battery. The items link language deficits to limitations in activities of daily living (ADLs) attributable to communication deficits. This new scale may be valuable in assessing the effects of speech therapies in clinical trials and the need for caregiver assistance in practice.

Global functional performance and caregiver assistance in children with pervasive development disorders

Background: Pervasive developmental disorder (PDD) affects motor, social and communication function of a child which may lead to affection of global function. Pediatric Evaluation of Disability Inventory (PEDI) is used to assess performances, degree of functional limitations as well as the extent of caregiver assistance. Hence, the need of the study was to quantify the functionality and dependence level in children with PDD. The aim of the study was to quantify the overall functional performance and need for caregiver assistance in PDD.Methods: An observational study was carried out on 12 children (age 6 months - 7.5 years) diagnosed as PDD, taking rehabilitation at pediatric rehab department of SBB college of physiotherapy. After taking consent of primary caregiver PEDI questionnaire was administered by interview method. Demographic details were noted by physiotherapist.Results: The score of functional skills in three domains were self-care (mean 8.58±5.265), mobility (mean 15.58±15.300) and social function (mean 5.42±4.641). The score of caregiver assistance in three domains were self-care (mean 2.75±3.441), mobility (mean 8.83±11.907) and social function (mean 1.50±2.316). Among six domains 12 children had the lowest score in terms of social function for both caregiver assistance and functional skills.Conclusions: Present study concludes that social function is majorly affected in terms of caregiver assistance in children with PDD.

Charting the territory: Describing the functional abilities of children with progressive neurological conditions

AimsLittle is known about the functional abilities of children with progressive genetic, metabolic, or neurological conditions (PNCs). In this study, children with PNCs were followed over a 2-year period to assess their functional abilities over time. Specific aims were to: 1) describe the changes in functional skills and the effects of age for children with PNCs, 2) assess changes in these children’s need for caregiver assistance over time, and 3) examine relationships between these children’s functional skills and need for caregiver assistance. MethodsThis study involved a longitudinal, descriptive design with three assessments occurring at Baseline, Year 1, Year 2. Functional skills and caregiver assistance were assessed by the Pediatric Evaluation of Disability Inventory (PEDI). The PEDI questionnaire was completed at baseline and then yearly by parents, along with the assistance of a trained research assistant (RA). ResultsThe study was completed with 83 children (mean age at Baseline=7.1yrs, SD=4.6). Mean Functional skills scores were in the low ranges at Baseline and did not change significantly across time points (F(2, 71)=0.437, p=0.58). Time point had no effect on caregiver assistance ratings (p<0.2); however, children required greater amounts of help with self-care at later time points than for other functional domains. Statistically significant correlations were found between PEDI-Functional skills and caregiver assistance ratings (r=0.80-0.90, p<0.01). ConclusionsFunctional skills were low for these children overall, irrespective of age. In children with PNCs: 1) mean functional skills did not change significantly over time; 2) caregiver assistance scores remained stable and 3) functional skills and levels of caregiver assistance were strongly positively correlated. Further research to explore the long-term functional trajectory in children with a PNC is recommended.

Low vision rehabilitation: current perspectives

Quality of life in low vision patients is deeply conditioned by their visual ability, and increased rates of depression, domestic injury, and need for caregiver assistance can be expected as a result of low performance. Much effort have been made recently in order to develop new tools and aids for rehabilitation of low vision, and this research has led to better knowledge of visual function and increased the likelihood of new therapies in the future. Modern low vision rehabilitation is the result of recent advances in science and technology, and will soon have an important role in people with vision impairment, numbers of whom are likely to increase, give the increasing age of the population. This review outlines scientific developments in low vision rehabilitation based on a search of the literature, covers the role of digital technology and advances in neurofunctional rehabilitation, and the possibility of restoring vision by use of retinal prostheses and cellular therapy.

Interdisciplinary development of manual and automated product usability assessments for older adults with dementia: lessons learned

The changes in cognitive abilities that accompany dementia can make it difficult to use everyday products that are required to complete activities of daily living. Products that are inherently more usable for people with dementia could facilitate independent activity completion, thus reducing the need for caregiver assistance. The objectives of this research were to: (1) gain an understanding of how water tap design impacted tap usability and (2) create an automated computerized tool that could assess tap usability. 27 older adults, who ranged from cognitively intact to advanced dementia, completed 1309 trials on five tap designs. Data were manually analyzed to investigate tap usability as well as used to develop an automated usability analysis tool. Researchers collaborated to modify existing techniques and to create novel ones to accomplish both goals. This paper presents lessons learned through the course of this research, which could be applicable in the development of other usability studies, automated vision-based assessments and the development of assistive technologies for cognitively impaired older adults. Collaborative interdisciplinary teamwork, which included older adult with dementia participants, was key to enabling innovative advances that achieved the projects' research goals.Implications for RehabilitationProducts that are implicitly familiar and usable by older adults could foster independent activity completion, potentially reducing reliance on a caregiver.The computer-based automated tool can significantly reduce the time and effort required to perform product usability analysis, making this type of analysis more feasible.Interdisciplinary collaboration can result in a more holistic understanding of assistive technology research challenges and enable innovative solutions.

Self-care of children with arthrogryposis in Gauteng, South Africa

IntroductionThis study investigated the functional ability of children with arthrogryposis, aged 6 months to 7.5 years, in South Africa, with the focus on the execution of age-appropriate self-care tasks. The level of independence, amount of caregiver assistance and modifications used during each task were ascertained, to assist in guiding occupational therapy intervention.MethodThis study was based on a quantitative cross-sectional design, with 19 participants divided into age groups assessed using the Pediatric Evaluation of Disability Inventory (PEDI).ResultsThe infant and toddler group performed above expected levels in the self-care domain, whereas the preschool and school-aged group performed below the expected level. A significant correlation between the amount of caregiver assistance needed and the participants’ level of independence was found especially in the preschool and school-aged group. There was little use of modifications even with occupational therapy intervention and participants relied on compensatory methods and assistance to execute self-care tasks.ConclusionThis study indicated that children with arthrogryposis need intervention to promote the independent execution of self-care tasks, and reduce the need for caregiver assistance. Therapists are encouraged to make use of modifications in furthering the age-appropriate independence of this population.

Nutritional status of patients with ataxia-telangiectasia: A case for early and ongoing nutrition support and intervention.

Ataxia-telangiectasia (A-T) is a rare genomic syndrome resulting in severe disability. Chronic childhood disorders can profoundly influence growth and development. Nutrition-related issues in A-T are not well described, and there are no nutritional guidelines. This study investigated the nutrition-related characteristics and behaviours of Australian A-T patients attending a national clinic. A cross-sectional analysis of 13 A-T patients (nine females; aged: 4-23 years): nutritional status was assessed by anthropometric and body cell mass (BCM) calculations. Parents reported their child's diet history and physical and behavioural factors that affect nutrition including fatigue and need for assistance. Ten (77%) had short stature (height for age z scores <-1), and seven (54%) were underweight for height (weight/height z scores <-1). Significant malnutrition (BCM z scores <-2) was detected in nine (69%) including the one adult who was severely malnourished. Malnutrition increased significantly with age (BCM for height z scores and age, r = -0.937, P < 0.001). Eight (62%) patients ate poorly compared with estimated energy requirement for weight. Poor diet quality was characterised by high fat and sugar choices. Parents reported significant nutritional barriers as chronic tiredness and the need for care giver assistance with meals. This study confirms profound malnutrition in Australian A-T patients. Poor intakes and diet quality suggest the need for early nutrition intervention. Ongoing support for families and early discussions on tube feeding are required to address changing needs in childhood and likely nutritional decline into adulthood. A prospective study is required to assess feasibility and effectiveness of nutrition interventions in young people with A-T.

Multiple sclerosis patients treated with intramuscular IFN-β-1a autoinjector in a real-world setting: prospective evaluation of treatment persistence, adherence, quality of life and satisfaction

Objectives: The 12-month observational PERSIST study (NCT01405872) evaluated adherence associated with the intramuscular IFNβ-1a (i.m. IFN-β-1a) autoinjector pen in multiple sclerosis (MS) patients.Methods: MS patients initiating i.m. IFN-β-1a autoinjector treatment were prospectively assessed for physician-reported persistence (percentage of patients remaining on therapy) and patient-reported outcomes, including adherence (percentage of unmissed injections), compliance (percentage of patients missing no injections), tolerability (injection-site reactions [ISRs] and pain) and satisfaction.Results: The intent-to-treat population included 232 patients; of the 188 physician-reported 12-month completers, 182 patients remained on treatment (96.8% persistence). Monthly compliance rates were 87.5 – 96.2%. Mean monthly pain scores were 1.5 – 1.8 (scale: 0 = ‘no pain’; 10 = ‘extremely painful’). At 12 months, 73.5% of respondents reported no ISRs, 94.9% were satisfied/very satisfied with the autoinjector and 88.2% found using the device easy/very easy. Injection fear, injection anxiety and need for injection assistance by caregivers decreased from the initial visit to 12 months. No new safety signals were observed.Conclusions: The autoinjector pen is associated with high levels of persistence, compliance, adherence, and satisfaction, little-to-no pain and low need for caregiver assistance. Although these data are limited by reliance on patient questionnaires and the absence of a direct comparator group, this treatment may reduce barriers to injection therapy, while supporting long-term MS management.

Wheelchair interventions, services and provision for disabled children: a mixed-method systematic review and conceptual framework.

BackgroundWheelchairs for disabled children (≤18 years) can provide health, developmental and social benefits. World Health Organisation and United Kingdom Government reports demonstrate the need for improved access to wheelchairs both locally and internationally. The use of health economics within this field is lacking. Provision of wheelchairs based on cost-effectiveness evidence is not currently possible. We conducted the first systematic review in this field to incorporate evidence of effectiveness, service user perspectives, policy intentions and cost-effectiveness in order to develop a conceptual framework to inform future research and service development.MethodsWe used an adapted EPPI-Centre mixed-method systematic review design with narrative summary, thematic and narrative synthesis. 11 databases were searched. Studies were appraised for quality using one of seven appropriate tools. A conceptual framework was developed from synthesised evidence.Results22 studies and 14 policies/guidelines were included. Powered wheelchairs appear to offer benefits in reduced need for caregiver assistance; improved communicative, personal-social and cognitive development; and improved mobility function and independent movement. From 14 months of age children can learn some degree of powered wheelchair driving competence. However, effectiveness evidence was limited and low quality. Children and parents placed emphasis on improving social skill and independence. Participation in wider society and development of meaningful relationships were key desired outcomes. Policy intentions and aspirations are in line with the perspectives of children and parents, although translation of policy recommendations into practice is lacking.ConclusionsThere is a distinct lack of high quality effectiveness and economic evidence in this field. Social and health needs should be seen as equally important when assessing the mobility needs of disabled children. Disabled children and parents placed highest priority on independence and psychosocial outcomes of wheelchair interventions. Translation of policy and guidelines into practice is lacking and more effective implementation strategies are required to improve services and outcomes. Future research should focus on outcome measure development, developing economic evaluation tools and incorporating these into high quality studies to address known research gaps. The novel conceptual framework maps current gaps in evidence and outlines areas for development.

Global Functional Performance and Caregiver Assistance in Autism and Asperger Syndrome

Autism and Asperger’s syndrome belong to a family of neuro-developmental disorders called Pervasive Development Disorders. The aims of this study were to 1) quantify the overall functional performance and need for caregiver assistance in autism (A) and Asperger’s syndrome (AS), 2) compare the findings between groups and to normative data from Brazilian children. Methods: A cross-sectional study was carried out involving 52 children between three and eight years of age diagnosed with either A (n = 26) or SA (n = 26). The Brazilian version of the Pediatric Evaluation of Disability Inventory was administered. Results: The children with A and AS achieved significantly lower scores than that expected for normality. The children with AS had a significantly better social function than that the children with A had. However, those with A achieved significantly better scores than those with AS on activities related to self-care and mobility, requiring less assistance. Conclusion: While patients with AS are better at social interaction than typical autistic children, they exhibit greater deficits with regard to basic tasks, such as self-care and mobility, requiring greater assistance than children with A.

The Assistance to Participate Scale to measure play and leisure support for children with developmental disability: update following Rasch analysis

The Assistance to Participate Scale (APS) was designed to measure the primary carer's estimate of the amount of assistance that their school-aged child with a disability requires to participate in play and leisure activities. Previous research suggests that the 8-item APS has good internal consistency. The construct validity of the scale is supported by strong correlations with instruments measuring similar constructs and discrimination between groups of children with developmental disability, based on extent of need for caregiver assistance. The aim of this current study was to undertake further evaluation of the psychometric properties of the APS using Rasch analysis. Rasch analysis was conducted using the RUMM2030 program to assess the APS items in terms of their overall fit to the Rasch model, individual item fit, response format, targeting and dimensionality. Rasch analysis showed good fit to the model, with no misfitting items and good internal consistency (PSI = 0.85). There was no differential item functioning across mothers' age, education level or child's age. Dimensionality testing supported the combination of all items to create a total score. Most items showed disordered thresholds, suggesting some inconsistencies in the way respondents used the response scale options. The APS has been subjected to substantial psychometric testing during development and evaluation, revealing a sound, brief and easy-to-use scale. The APS has a number of potential clinical and research uses measuring the amount of additional assistance that children require from their primary care giver to participate in play activities.

Community-Acquired Pneumonia: Symptoms and Burden of Illness at Diagnosis among US Adults Aged 50 Years and Older

Community-acquired pneumonia (CAP) is a leading cause of morbidity and mortality in older adults, yet few studies have comprehensively measured the burden of CAP symptoms and their impact from the patient perspective. Our Web-survey used the newly developed CAP burden of illness questionnaire (CAP-BIQ) designed to assess the presence of key symptoms, comorbid conditions affected by CAP, psychosocial impacts, productivity, and CAP-associated physician visits in US adults aged 50 years and older. The CAP-BIQ was developed from semi-structured one-on-one interviews and finalized after cognitive debriefings with recently diagnosed CAP patients. The CAP-BIQ was then administered to 500 survey participants with a CAP diagnosis within the past 120 days confirmed by chest imaging recruited from a Web-based panel. Analyses of survey results were weighted for national representativeness, and were compared between relevant age, hospitalization status, and pneumonia-risk subgroups. The survey participants' mean age was 62.4 years; 45 % were men; and 39.6 % were hospitalized due to CAP. On average, the surveys were completed 56.9 days after pneumonia diagnosis. Nearly all participants reported tiredness, cough, body aches, weakness, shortness of breath, wheezing, and a weak appetite at the time of diagnosis (99.0, 96.8, 96.9, 94.1, 89.1, 85.8, and 78.5 %, respectively). There was generally greater symptom prevalence at diagnosis in younger, nonhospitalized, or high-risk subgroups when compared to their respective older, hospitalized, or low-risk counterparts. Most participants reported at least one cough-related and weakness-related impact on their daily life and activities from CAP. Over three quarters of the respondents (77.4 %) needed assistance from a friend or family member during their bout with pneumonia and a majority of respondents (83.6 %) were satisfied with the care they received from their doctors across the course of their illness. This study systematically assessed CAP symptoms and their impacts using the CAP-BIQ, a questionnaire with established content validity. At CAP diagnosis, the range of patient-reported symptoms was broader than previous studies have reported. Additionally, the overwhelming need for caregiver assistance demonstrates the burden this illness places on older adults.

The Feasibility of Caregiver-Assisted Home Nocturnal Hemodialysis

Background/Aims: Home nocturnal hemodialysis (HNHD) has several benefits. However, patients that require caregiver assistance for dialysis may be at risk for poor outcomes. In an effort to determine if HNHD can be extended to assisted patients, an analysis of their outcomes is important. Methods: We examined a single-center cohort of patients that started and completed HNHD training between 01 January 2003 and 31 December 2010 (last follow-up 01 July 2011). Patients were classified as ‘dependent' if they required caregiver assistance for dialysis. The primary outcome was time to first hospitalization, technique failure, or death for dependent versus independent patients. Secondary outcomes included hospitalization rate and hospital days. Results: A total of 152 patients were included in this study. Dependent patients (n = 47) were older (51 vs. 42 years), more likely to have diabetic end-stage renal disease (26 vs. 8%) and had higher Charlson Comorbidity Index scores (4 vs. 3) compared to independent patients (n = 105). In an adjusted analysis there was no significant difference in the time to composite outcome for dependent versus independent patients (relative hazard 1.25; 95% confidence interval, CI, 0.76-2.04). Adjusted incidence rate ratios for hospitalizations (1.58; 95% CI 0.95-2.65) and hospital days (1.84; 95% CI 0.78-4.34) were not significantly different for dependent versus independent patients. Conclusion: Our study suggests that outcomes of caregiver-assisted versus independent HNHD patients are likely driven by differences in case mix. The need for caregiver assistance alone should not be a deterrent to HNHD.

A Canadian online survey of oncology nurses’ perspectives on the management of breakthrough pain in cancer (BTPc)

This paper explores Canadian oncology nurses' perception of management of breakthrough pain in cancer (BTPc). An online questionnaire was distributed to 668 oncology nurses across Canada, and 201 participated. More nurses reported that patients used hydromorphone (99.5%), morphine (97.0%), codeine (88.1%), or oxycodone (88.1%) for BTPc, than fentanyl preparations (64.7%). Problems with opioid administration reported by nurses included failure to work quickly enough (35.7%), difficulty swallowing (16.6%), need for caregiver assistance (13.2%), mouth sores (12.6%) and dry mouth (11.5%). Although most nurses discussed BTPc management with their patients, the vast majority (72.2%) were not very satisfied with current treatment modalities. Effective dialogue with patients and access to educational resources/tools may help optimize therapy and enhance concordance with BTPc medications.