Costs of dementia in the Czech Republic

Objective

The aim of this study was to estimate the cost of dementia in the Czech Republic.

Methods

One hundred and nineteen patient-caregiver dyads participated in our multicenter observational cost-of-illness study. The modified Resource Utilization in Dementia Questionnaire was used as the main tool to collect data from patients and caregivers. Medical specialists provided additional data from medical records. The average costs of dementia were calculated and patients were then divided by the level of cognitive impairment. A generalized linear model was used to determine if differences were present for selected cost variables.

Results

The mean (standard deviation) for direct cost per a patient in a month was estimated to be €243.0 (138.0), €1727.1 (1075.6) for the indirect cost, and €1970.0 (1090.3) for the total cost of dementia in the Czech Republic. All of the costs increased as dementia severity increased. Both the indirect and total costs significantly (p < 0.05) increased if patients were living with their primary caregiver, and if the severity of cognitive impairment was increased.

Conclusions

The indirect cost, which was represented mainly by informal care, comprised the main part of the total cost of care for patients with dementia in the Czech Republic. Both total and indirect care costs increased significantly the cognition declined.

     

Diagnosing dementia: No easy job

Background

From both clinical experience and research we learned that in complex progressive disorders such as dementia, diagnosis includes multiple steps, each with their own clinical and research characteristics.

Discussion

Diagnosing starts with a trigger phase in which the GP gradually realizes that dementia may be emerging. This is followed by a disease-oriented diagnosis and subsequently a care -oriented diagnosis. In parallel the GP should consider the consequences of this process for the caregiver and the interaction between both. As soon as a comprehensive diagnosis and care plan are available, monitoring follows.

Summary

We propose to split the diagnostic process into four diagnostic steps, followed by a monitoring phase. We recommend to include these steps when designing studies on screening, diagnosis and monitoring of patients with dementia and their families.     

Different components of nutritional status in older inpatients with cognitive impairment

Objectives

To evaluate different components of nutritional status in older patients with cognitive deficit, particularly in those with mild cognitive impairment (MCI).

Design

Cross-sectional study.

Setting and participants

560 elderly subjects aged ?? 65 years consecutively admitted to an acute Geriatric Unit of Apulia region of southern Italy.

Measurements

A standardized comprehensive geriatric assessment was used to evaluate medical, cognitive, affective and social aspects. Nutritional status was assessed using the mini nutritional assessment (MNA). The cognitive function was categorized into three levels ?? MCI, dementia or normal cognition (NoCI) ?? according to the neuropsychological test score.

Results

Subjects with cognitive decline had significantly lower frequency of well-nourished (MCI=10%, dementia=8%, NoCI=22%, p<0.05) and higher frequency of malnourished (MCI=47%, dementia=62%, NoCI=19%, p<0.001) than patients with normal cognition. Similarly, MNA total score, MNA-3 and MNA-4 subscores were significantly lower in patients with MCI and dementia than patients with normal cognition (p<0.001).

Conclusions

These results suggest that cognitive decline may be associated with malnutrition in this sample of hospitalized older patients. Dietary habits (MNA-3) and subjective assessment of self-perceived quality of health and nutrition (MNA-4) are particularly poor also in patients with MCI and could be. very important variables to be considered in the multidimensional evaluation of subjects with cognitive impairment.     

Quality of life of community-residing persons with dementia based on self-rated and caregiver-rated measures

Purpose

To identify correlates of self-rated and caregiver-rated quality of life (QOL) in community-residing persons with dementia (PWD) for intervention development.

Methods

Cross-sectional data of 254 PWD and their caregivers participating in a clinical trial were derived from in-home assessments. Self-rated QOL was measured with the Quality of Life-Alzheimer Disease (QOL-AD) scale, and caregiver-rated QOL was measured using the QOL-AD and Alzheimer Disease-Related Quality of Life (ADRQL) scales. Multivariate modeling identified correlates of the PWD?? QOL.

Results

Self-rated QOL was related significantly to participant race, unmet needs, depression, and total medications. Caregiver-rated QOL-AD scores were significantly associated with participant function, unmet needs, depression, and health problems and with caregiver burden and self-rated health. Significant correlates of ADRQL scores included neuropsychiatric symptom severity, functional and cognitive impairment, and caregiver burden and depression.

Conclusions

Correlates of QOL in community-residing PWD depend on who rates the PWD??s QOL and which measure is used. Addressing health problems, medication use, and dementia-related unmet needs, reducing functional dependency, and treating neuropsychiatric symptoms in PWD, while reducing caregiver burden and depression, may maximize QOL in those with dementia.     

Virgin olive oil supplementation and long-term cognition: the Predimed-Navarra randomized, trial

Objective

XXXto assess the effect on cognition of a controlled intervention testing Mediterranean diets (MedDiet).

Design

XXXrandomized trial after 6.5 years of nutritional intervention.

Setting

Eight primary care centers affiliated to the University of Navarra.

Participants

A random subsample of 285 participants (95 randomly allocated to each of 3 groups) of the PREDIMED-NAVARRA trial. All of them were at high vascular risk (44.8% men, 74.1± 5.7 years at cognitive evaluation).

Interventions

Nutritional intervention comparing two MedDiets (supplemented with extra-virgin olive oil [EVOO] or mixed nuts) versus a low-fat control diet. Participants received intensive education to increase adherence to the intended intervention. Participants allocated to the MedDiet groups received EVOO (1 l/week) or 30 g/day of mixed nuts. Dietary habits were evaluated using a validated 137-item food frequency questionnaire (FFQ). Additionally, adherence to MedDiet was appraised using a 14-item questionnaire both at baseline and yearly thereafter.

Measurements

XXXcognitive performance as a main outcome and cognitive status (normal, mild cognitive impairment [MCI] or dementia) as a secondary outcome were evaluated by two neurologists blinded to group assignment after 6.5 years of nutritional intervention.

Results

Better post-trial cognitive performance versus control in all cognitive domains and significantly better performance across fluency and memory tasks were observed for participants allocated to the MedDiet+EVOO group. After adjustment for sex, age, education, apolipoprotein E genotype, family history of cognitive impairment/dementia, smoking, physical activity, body mass index, hypertension, dyslipidaemia, diabetes, alcohol and total energy intake, this group also showed lower MCI (OR=0.34 95% CI: 0.12–0.97) compared with control group. Participants assigned to MedDiet+Nuts group did not differ from controls.

Conclusion

A long-term intervention with an EVOO-rich MedDiet resulted in a better cognitive function in comparison with a control diet. However, non-significant differences were found for most cognitive domains. Participants allocated to an EVOO-rich MedDiet had less MCI than controls.     

Hypovitaminosis D in psychogeriatric inpatients

Objectives

This study investigated the rate of hypovitaminosis D in psychogeriatric inpatients and explored whether any associations exist between vitamin D levels, cognitive function, and psychiatric diagnoses.

Design

Retrospective medical record review from November 2000 through November 2010.

Setting

Geriatric psychiatric ward of an academic tertiary care hospital.

Participants

Psychiatric inpatients aged 65 years or older.

Measurements and analysis methods

Serum 25-hydroxyvitamin D [25(OH)D] levels were measured at admission. Associations between 25(OH)D levels, Mini-Mental State Examination (MMSE) scores were analyzed using Spearman correlations, and psychiatric diagnoses were analyzed using logistic regression models and Fisher’s exact tests.

Results

In 141 subjects (mean age, 77. In 141 subjects (mean age, 77.8 years; 86 [61%] female; 135 [96%] white), the most frequent diagnoses were major depressive disorder in 81 patients (57%), dementia in 38 (27%), delirium in 13 (9%), anxiety in 12 (8.5%), and bipolar disorder in 11 (8%). Mean MMSE score was 24±6.4 (range, 3–30). Forty-three subjects (30.4%) had mild to moderate vitamin D deficiency [25(OH)D, 10–24 ng/mL], and 6 (4.2%) had severe deficiency [25(OH)D <10 ng/mL].

Conclusions

Hypovitaminosis D was common in elderly psychiatric inpatients. No associations were found between vitamin D levels and global cognitive function or psychiatric diagnoses.     

Fewer referrals to Swedish emergency departments among nursing home patients with dementia, comprehensive cognitive decline and multicomorbidity

Objectives

The objective was to describe the extent to which nursing home patients had cognitive impairments and were diagnosed with dementia. Furthermore, to describe and compare multicomorbidity, health status and drug use in the three subgroups; dementia diagnosis/not referred, dementia diagnosis/referred and no dementia diagnosis/not referred to an emergency department (ED) over a one-year period.

Methods

A cross-sectional follow-up study was carried out in Sweden. RAI/MDS assessments were conducted on 719 patients in 24 nursing homes, of whom 209 were referred to EDs during a one-year period, accounting for 314 visits. This study involved an extensive examination of the population.

Results

The 719 patients were reported to suffer from comprehensive cognitive impairments, which not accorded with the dementia diagnoses, they were significantly fewer. Cognitive decline or dementia diagnosis contributed to a significant decrease of referrals to EDs. Patients with dementia diagnosis/not referred had difficulties understanding others, as well as impaired vision and hearing. Patients with dementia diagnosis/referred usually understood messages. Low BMI, daily pain, multicomorbidity and high drug consumption occurred in all groups. Patients with no dementia diagnosis/not referred had significantly less multicomorbidity. Neuroleptica was significantly more prevalent among those with dementia diagnosis.

Conclusion

Dementia remains undetected. Patients with cognitive decline and dementia are probably as sick as or even worse than others but may, due to low priority be undertreated or referrals avoided with the objective to provide good care in the setting. Observational studies are needed to identify what is done and could be done in referral situations.     

Percutaneous endoscopic gastrostomy (PEG) tubes are placed in elderly adults in Japan with advanced dementia regardless of expectation of improvement in quality of life

Background

The Japan Geriatrics Society published a guideline on the decision-making process for health care for the elderly in June 2012, noting that withholding or withdrawing feeding tubes are treatment options that should be discussed during the decision-making process. Arguments against the guideline posit that the insertion of a percutaneous endoscopic gastrostomy (PEG) tube feeding may improve quality of life (QOL) for elderly adults and their relatives.

Objectives

The aim of the present study was to explore (a) expected outcomes with PEG tube placement and (b) outcomes from PEG tube feeding in long-term care settings among elderly adults with advanced dementia in Japan.

Design

This study was conducted using a cross-sectional study design.

Setting

A total of 381 hospitals and 985 long-term care facilities provided sets of completed questionnaires.

Participants

There were 1 199 hospital patients and 2 160 long-term care patients aged 65 years or older with PEG tube placement included in the analysis.

Measurements

The nurses or physicians at each hospital provided information on the level of dementia at the time of PEG tube placement and on the expected outcomes of PEG tube feeding for elderly hospital patients. The nurses or other direct care workers at each facility provided information on the level of dementia and outcomes from PEG tube feeding for the long-term care patients.

Results

In the hospital patient group, 62.9% of patients had advanced dementia. PEG tube feeding was expected to prolong survival for 51.1% of hospital patients with advanced dementia. Improved QOL was expected for 39.1% of them. In the long-term care patient group, 61.7% of patients had advanced dementia. The rate of patients enjoying their own lives was lower in long-term care patients who had advanced dementia (4.2%) than in the other patients (16.4%). Approximately 60% of relatives reported satisfaction with the QOL of the patients, both in the long-term care patients with advanced dementia and the other patients.

Conclusion

Our results question the assumption that PEG tube feeding may improve QOL among elderly adults with advanced dementia. The national health policy should explore an approach to help patients, relatives, and practitioners make decisions about feeding options.     

A combination of galantamine and memantine modifies cognitive function in subjects with amnestic MCI

Objectives

Mild cognitive impairment (MCI) is etiologically heterogeneous, and a substantial proportion of MCI subjects will develop different dementia disorders. One subtype of this syndrome, amnestic MCI, occurs preferentially but not exclusively in prodromal AD and is characterized by defined deficits of episodic memory.

Design, setting and participants

For a 2-year, double-blinded, placebo-controlled study MCI patients, presenting with an amnestic syndrome but not necessarily based on presumed prodromal AD were randomized.

Intervention

Patients received (a) a combination of 16 mg galantamine plus 20 mg memantine, or (b) 16 mg galantamine alone or (c) placebo.

Measurements

The primary objective was to explore the differential impact of these interventions on the progression to dementia and on cognitive changes as measured by the ADAScog.

Results

After recruitment of 232 subjects, the trial was halted before reaching the planned sample size, because safety concerns arose in other studies with galantamine in MCI. This resulted in a variable treatment duration of 2?C52 weeks. The statistical analysis plan was amended for studying cognitive effects of discontinuing the study medication, which was done separately for galantamine and memantine, and under double-blind conditions. There was one death, no unexpected severe adverse events, and no differences of severe adverse events between the treatment arms. The cognitive changes on the ADAScog were not different among the groups. Only for the subgroup of amnestic MCI with presumed AD etiology, a significant improvement of ADAScog score over placebo before the discontinuation of medication was observed, while amnestic MCI presumably due to other etiologies showed no cognitive changes with broad variation. Cognitive improvement was numerically larger in the combination treatment group than under galantamine alone. Patients who received placebo declined as expected. Discontinuation of galantamine, either as part of the combination regimen or as mono treatment, resulted in a transient decline of the ADAScog score in amnestic MCI of presumed AD etiology, while discontinuation of Memantine did not change the cognitive status.

Conclusion

In an interrupted trial with amnestic MCI subjects the combination of galantamine plus memantine were generally well tolerated. In the subgroup of MCI subjects with presumed AD etiology, a cognitive benefit of a short-term combination treatment of galantamine plus memantine was observed, and cognitive decline occurred after discontinuation of galantamine.     

Do general practitioners recognize mild cognitive impairment in their patients?

Objectives

The need for recognition of mild cognitive impairment (MCI) in primary care is increasingly discussed because MCI is a risk factor for dementia. General Practitioners (GPs) could play an important role in the detection of MCI since they have regular and long-term contact with the majority of the elderly population. Thus the objective of this study is to find out how well GPs recognize persons with MCI in their practice population.

Design

Cross-sectional study.

Setting

Primary care chart registry sample.

Participants

3,242 non-demented GP patients aged 75–89 years.

Measurements

GPs assessed the cognitive status of their patients on the Global Deterioration Scale (GDS). Thereafter, trained interviewers collected psychometric data by interviewing the patients at home. The interview data constitute the basis for the definition of MCI cases (gold standard).

Results

The sensitivity of GPs to detect MCI was very low (11–12%) whereas their specificity amounts to 93–94%. Patients with MCI with a middle or high level of education more often got a false negative assignment than patients with a low educational level. The risk of a false positive assignment rose with the patients’ degree of comorbidity. GPs were better at detecting MCI when memory or two and more MCIdomains were impaired.

Conclusion

The results show that GPs recognise MCI in a very limited number of cases when based on clinical impression only. A further development of the MCI concept and its operationalisation is necessary. Emphasis should be placed on validated, reliable and standardised tests for routine use in primary care encompassing other than only cognitive domains and on case finding approaches rather than on screening. Then a better attention and qualification of GPs with regard to the recognition of MCI might be achievable.     

Gait variability at fast-pace walking speed: A biomarker of mild cognitive impairment?

Background

The interpretation of the increase in stride-to-stride variability of stride time (STV) regarding the evolution of cognitive deficits across the dementia spectrum is matter of debate.

Objective

The aim of this study was to compare STV at usual and fast-pace walking speeds of MCI patients with that of cognitively healthy individuals (CHI) and Alzheimer’s disease (AD) patients with mild dementia, while considering the effects of potential confounders.

Methods

STV while walking at usual and fast-pace walking speeds was recorded with the GAITRite® system from 116 older adults (mean age 75.6±6.5 years; 55.2% female) divided into 3 groups according to their cognitive status (44 CHI, 39 MCI patients and 33 AD patients with mild dementia).

Results

The full adjusted multiple linear regression models showed that high STV was associated with slow gait speed at usual-pace walking speed (P=0.002) and with the MCI status at fast-pace walking speed (P=0.015).

Conclusions

High STV at fast-pace walking speed was a specific gait disturbance of MCI patients in the sample of studied participants, and thus could be used in the future as a specific biomarker of MCI patients.     

Resource Use and Cost of Alzheimer’s Disease in France: 18-Month Results from the GERAS Observational Study

Background

There is little longitudinal data on resource use and costs associated with Alzheimer’s disease (AD) in France.

Conversion from mild cognitive impairment to dementia: Influence of folic acid and vitamin B12 use in the vita cohort

Objective

Increased serum homocysteine and low folate levels are associated with a higher rate of conversion to dementia. This study examined the influence of vitamin B12/folic acid intake on the conversion from mild cognitive impairment (MCI) to dementia.

Participants

A community dwelling cohort of older adults (N=81) from the Vienna Transdanube aging study with MCI.

Design

Prospective study with a retrospective evaluation of vitamin intake.

Measurements

Laboratory measurements, brain magnetic resonance imaging, and cognitive functioning were assessed at baseline and at five-year follow-up.

Results

The self-reported combined use of folic acid and vitamin B12 for more than one year was associated with a lower conversion rate to dementia. Serum levels of homocysteine and vitamin B12 as measured at baseline or at five years were not associated with conversion. Higher folate levels at baseline in females predicted a lower conversion rate to dementia. The assessment of brain morphological parameters by magnetic resonance imaging revealed higher serum folate at baseline, predicting lower medial temporal lobe atrophy and higher levels of homocysteine at baseline, predicting moderate/severe global brain atrophy at five years. Users of vitamin B12 or folate, independent of time and pattern of use, had lower grades of periventricular hyperintensities and lower grades of deep white matter lesions as compared to non-users.

Conclusions

These results from a middle european study support observations on the protective ability of folate in MCI patients with respect to conversion to dementia; they also point to a participation of homocysteine metabolism on processes associated with brain atrophy.     

Bewegung zur Prävention von Demenz

Background

Dementia diseases pose a global health problem. Recent studies show that physical activity can slow cognitive decline and delay the onset of dementia. In Germany there is a lack of evidence-based physical activity programs for preventing dementia.

Goals

The intervention study GESTALT investigated if and how an evidence-based physical activity program for preventing dementia could be implemented into the daily routines of prevention providers. The focus of this article is on the efficacy of the physical activity program regarding the cognitive and physical performance of the participants (65–75 years), as well as on the increase and retention of physical activity.

Methods

GESTALT included a multimodal exercise program and accompanying telephone support.

Results

GESTALT was successfully implemented by the prevention providers, and was well accepted by the participants. 60?% of the participants were practicing additional physical activity by the time of follow-up. There were improvements in cognitive performance with respect to short-term and working memory. Some participants met only a few risk factors for dementia.

Conclusions

The successful implementation suggests continuation and dissemination of GESTALT. In order to reach more people who have never engaged in physical activity and meet more risk factors for dementia, refined recruitment strategies are needed.     

Predictors of institution admission in the year following acute hospitalisation of elderly people

Objectives

The aim of the study was to identify factors related to institutionalisation within one-year follow up of subjects aged 75 or over, hospitalised via the emergency department (ED).

Design

Prospective multicentre cohort.

Setting

Nine French university teaching hospitals.

Participants

One thousand and forty seven (1 047) non institutionalised subjects aged 75 or over, hospitalised via ED. A sub group analysis was performed on the 894 subjects with a caregiver.

Measurements

Patients were assessed using Comprehensive Geriatric Assessment (CGA) tools. Cox survival analysis was performed to identify predictors of institutionalisation at one year.

Results

Within one year after hospital admission, 210 (20.1%) subjects were institutionalised For the overall study population, age >85 years (HR 1.6; 95% CI 1.1–2.1; p=0.005), inability to use the toilet (HR 1.6; 95%CI 1.1–2.4; p=0.007), balance disorders (HR 1.6; 95%CI 1.1–2.1; p=0.005) and presence of dementia syndrome (HR 1.9; 95%CI 1.4–2.6; p<0.001) proved to be independent predictors of institutionalisation; while a greater number of children was inversely linked to institutionalisation (HR 0.8; 95%CI 0.7–0.9; p<:0.001). Bathing was of borderline significance (p=.09). For subjects with a caregiver, initial caregiver burden was significantly linked to institutionalisation within one year, in addition to the predictors observed in the overall study population.

Conclusions

CGA performed at the beginning of hospitalisation in acute medical wards is useful to predict institutionalisation. Most of the predictors identified can lead to targeted therapeutic options with a view to preventing or delaying institution admission.     

The medical care of patients with primary care home nursing is complex and influenced by non-medical factors: a comprehensive retrospective study from a suburban area in Sweden

Background

The reduced number of hospital beds and an ageing population have resulted in growing demands for home nursing. We know very little about the comprehensive care of these patients. The objectives were to identify the care, in addition to primary health care, of patients with primary-care home nursing to give a comprehensive view of their care and to investigate how personal, social and functional factors influence the use of specialised medical care.

Methods

One-third (158) of all patients receiving primary-care home nursing in an area were sampled, and 73 % (116) were included. Their care from October 1995 until October 1996 was investigated by sending questionnaires to district nurses and home-help providers and by collecting retrospective data from primary-care records and official statistics. We used non-parametric statistical methods, i.e. medians and minimum - maximum, χ2, and the Mann-Whitney test, since the data were not normally distributed. Conditional logistic regression was used to study whether personal, social or functional factors influenced the chance (expressed as odds ratio) that study patients had made visits to or had received inpatient care from specialised medical care during the study year.

Results

56 % of the patients had been hospitalised. 73 % had made outpatient visits to specialised medical care. The care took place at 14 different hospitals, and more than 22 specialities were involved, but local care predominated. Almost all patients visited doctors, usually in both primary and specialised medical care. Patients who saw doctors in specialised care had more help from all other categories of care. Patients who received help from their families made more visits to specialised medical care and patients with severe ADL dependence made fewer visits.

Conclusions

The care of patients with primary-care home nursing is complex. Apart from home nursing, all patients also made outpatient visits to doctors, usually in both primary and specialised medical care. Many different caregivers and professions were involved. Reduced functional capacity decreased and help from family members increased the chance of having received outpatient specialised medical care. This raises questions concerning the medical care for patients with both medical and functional problems.     

The needs of informal caregivers and barriers of primary care workers toward dementia management in primary care: a qualitative study in Beijing

Background

Informal caregivers of people with dementia in Beijing are increasingly called upon to provide home-based care for their patients due to the increasing number of dementia patients and the shortage of standardized institutional solutions of care for patients in China. This study aimed to clarify the needs of informal caregivers and barriers of primary care workers toward dementia management in primary care in Beijing to provide references that may help to improve the care and services provided to individuals with dementia and their family caregivers residing in urban China.

Methods

A mixed-methods approach was used in this study. We performed individual in-depth interviews with 10 informal caregivers. Moreover, we carried out focus group interviews with 29 primary care workers. Content analysis was used to separately identify themes and codes. Discrepancies were discussed until final agreement was achieved.

Results

Three themes representing the core attitudes of informal caregivers and primary care workers were identified: care knowledge and skills, psychological counseling, and collaborative management. Most primary care workers believed that the management of dementia patients in primary care was necessary. However, due to the heavy work load and different medical specialties involved, these workers were unable to manage it.

Conclusions

Professional training focused on dementia for primary care workers should be strengthened. At the same time, the establishment of a community-based dementia team management model that includes specialists, community health service centers (CHSCs), and community committees should be explored.

     

Impact of caregiver activities and social supports on multidimensional caregiver burden: analyses from nationally-representative surveys of cancer patients and their caregivers

Purpose

Informal caregivers of individuals with cancer may experience substantial burdens. To develop interventions to support these caregivers, it is crucial to quantify and understand the domains of burdens potentially experienced by caregivers and factors contributing to each domain.

Methods

Using data from two national surveys, the National Survey of Caregiving (NSOC) linked to the National Health and Aging Trends Survey (NHATS), we identified all participants in the NHATS diagnosed with cancer who had a caregiver participating in the NSOC. Guided by a theoretical model, twenty-two items in the NSOC related to caregiver health, mood and outlook were included in factor analysis to develop scales capturing domains of burden. Multivariable regression analyses examined whether activities performed by caregivers and supports for caregivers were associated with these burden scales.

Results

Analysis of responses from 373 caregivers of cancer patients identified three scales: emotional burden; psychological burden; and relationship with the patient. Providing assistance managing medical care was associated with increased emotional and psychological burden, while assistance with non-medical issues increased psychological burden and worsened relationships with patients. Caregiver provision of direct patient care activities was also associated with increased burden but improved relationships with patients. Use of caregiver supports showed mixed associations with burden.

Conclusions

Using a nationally-representative sample of cancer patients and their caregivers and brief publicly-available survey questions, we present three scales addressing different aspects of caregiver burden that are responsive to caregiver activities and social supports. This may assist in developing and evaluating intervention to decrease caregiver burden.

     

Satisfaction with oncology care among patients with advanced cancer and their caregivers

Purpose

Satisfaction with care is important for quality assurance in oncology, but may differ between patients and caregivers. We aimed to assess satisfaction with cancer care in paired analyses of these groups, examine differences between them, and identify areas for potential intervention.

Methods

Patients with advanced cancer and their caregivers were recruited from 24 medical oncology outpatient clinics. Satisfaction with care was measured using the FAMCARE (caregivers) and FAMCARE-Patient (patients) scales. Quality of life (QOL) was measured with the Caregiver QOL Index-Cancer (caregivers) and FACIT-Sp (patients). The paired t test assessed differences in overall satisfaction and individual scores. In addition, scores were dichotomized into satisfied versus not satisfied, and McNemar’s test was used to assess differences. Multivariable linear regression analyses assessed predictors of patient and caregiver satisfaction, respectively.

Results

Satisfaction ratings in the 191 patient–caregiver pairs were high, but patients were more satisfied (p = 0.02). Both groups were least satisfied with information regarding prognosis and pain management. Caregivers were significantly less satisfied than patients regarding coordination of care (p = 0.001) and family inclusion in treatment/care decisions (p < 0.0001). In both groups, higher education was associated with lower satisfaction (p ≤ 0.01), while better QOL predicted greater satisfaction (p < 0.0001).

Conclusions

Communication regarding pain control and prognosis were identified as key areas for improvement. Caregivers seem to desire greater involvement in treatment decisions, though this must be balanced with patient autonomy.