The costs of multiple sclerosis: a cross-sectional,multicenter cost-of-illness study in Italy

Objectives To estimate the socio-economic impact of multiple sclerosis (MS) in Italy. Methods Outpatients with MS were enrolled at 44 centres across Italy. Socio-demographic, clinical and resource utilization data were collected using a validated questionnaire. Each patient completed a weekly diary of expenses due to MS over a three-month period. Direct health care costs and indirect costs (lack of productivity for the patient and for caregivers) were assessed for the whole population and were compared among five groups, categorised by disease severity (EDSS score). An analysis of variance was carried out on socio-demographic variables. Results For the total population of 566 patients, the mean direct cost over three months was ITL 2,134,000, the mean indirect cost was ITL 7,775,000. Costs were significantly higher for male patients (p < 0.05) and showed a significant increase with increasing age (p < 0.0005), disease duration (p < 0.0005) and disease severity (p < 0.0005). Costs for patients in a progressive phase were significantly higher (p < 0.0005). There were no significant geographical differences among the regions of Italy. Conclusions This study confirms that MS represents a high economic burden, with indirect costs greatly exceeding direct costs. Unpaid caregivers remain the culturally accepted mode of care for MS patients in Italy and this study illustrates the impact of their loss of earnings. As costs increase with disease progression, these findings suggest that treatment efforts should focus on patients in the early stages of MS, in order to slow down disease progression. Received: 16 February 2001 Received in revised form: 29 May 2001, Accepted: 31 May 2001     

@ease peer-to-peer youth walk-in centres in The Netherlands: A protocol for evaluating longitudinal outcomes,follow-up results and cost-of-illness

Aim

Innovative youth mental health services around the globe vigorously work on increasing highly needed mental health care accessibility but their service users and care effectiveness have rarely been studied. The Dutch youth walk-in centres of @ease opened in 2018, with currently 11 locations at which free anonymous peer-to-peer counselling is offered to young people aged 12–25. The aim of this protocol is to outline the to-be-conducted research at @ease.

Methods

Three studies are outlined: (1) an outcome evaluation of @ease visits using hierarchical mixed model analyses and change calculations, (2) a cost-of-illness study using calculations for costs of truancy and care usage among these help-seeking young people, with regression analyses for risk group identification, and (3) a follow-up evaluation at three, six and 12 months to assess long-term effects after ending @ease visits. Data provided by young people include demographics, parental mental illness, truancy, past treatment, psychological distress (CORE-10) and health-related quality of life (EQ-5D-5L). Social and occupational functioning (SOFAS), suicidal ideation and need for referral are rated by the counsellors. Questionnaires are filled out at the end of every visit and at follow-up via e-mail or text, provided permission is given.

Discussion

Research regarding the visitors and effectiveness of the @ease services is fully original. It offers unique insights into the mental wellbeing and cost-of-illness of young people who may otherwise remain unseen while suffering from a high disease burden. The upcoming studies shed light on this unseen group, inform policy and practice and direct future research.     

The Nottingham study of neurotic disorder: predictors of 12 year costs

OBJECTIVE: To examine the relationship between clinical, demographic and socio-economic characteristics and the long-term costs of a cohort of neurotic patients. METHOD: Analysis of the costs of a cohort of 210 people entered in the Nottingham study of neurotic disorders, a randomized controlled evaluation of five treatments for neurotic disorders. Service use data were collected at 5 and 12 years after study entry. Multiple regression analyses were conducted. RESULTS: The total cost per patient over the 12-year follow-up period was calculated to be $11,940 (SD $15,520) ( pound7450, SD pound9690). Higher costs were significantly associated with the presence of general neurotic syndrome, an initial diagnosis of dysthymia and a recurrent episode of illness. CONCLUSION: The total costs of care for a range of neurotic disorders are broadly comparable with other estimates of costs reported in the literature for similar populations. Those responsible for higher costs in the longer-term have comorbid anxiety, depressive and personality disorders.     

People with intellectual disability, sensory impairments and behaviour disorder: a case series

Background Sensory impairments (SIs) are more prevalent in people with intellectual disability (ID). Both conditions lead to higher rates of emotional and behavioural problems than in the general population. The identification of psychiatric disorders in this group can be difficult, particularly in those with severe ID and limited communication skills. Method The present paper presents a series of 18 case reports of individuals with ID, SI and behavioural problems. Results The majority of cases were young male caucasians with congenital rubella syndrome and autistic spectrum disorder, referred because of self‐injurious behaviour (SIB) or aggression. Nine cases were treated with autidepressants, five underwent environmental changes and two had medication reduced. All showed some improvement. Conclusions The benefits of comprehensive assessments, the use of standardized assessment tools and trials of treatments are discussed in the context of making psychiatric diagnoses.     

conference report: Mental health and intellectual disability: an international perspective

The present paper reports on the inaugural meeting of the Mental Health Special Interest Research Group (SIRG) of the International Association for the Scientific study of Intellectual disability which was held at Fitzwilliam College, Cambridge, UK, in March 1998. The meeting was organized in conjunction with the Ninth Annual SIRG on ageing and intellectual disability. Representatives from North America, several European and Scandinavian countries, Australia, and Israel attended. Two broad themes had been determined prior to the meeting: ‘Improving the detection of mental health problems’ and ‘Research strategies for identifying risk factors for mental health problems’. In the presentations and subsequent discussions, it was apparent that there were extrenely diverse perspectives both across and within the different countries represented. Not only were individuals' experiences very different, but most strikingly, the theoretical frameworks were very diverse. This was partly a function of there being understandable differences in perspectives across disciplines, but at its most marked, there were fundamental differences in the way both intellectual disability and mental health were conceptualized.     

Diogenes' syndrome in patients with intellectual disability: ‘a rose by any other name’?

Diogenes' syndrome is characterized by marked self-neglect, domestic squalor, social withdrawal and hoarding of rubbish (syllogomania). The syndrome has been reported to occur in association with a wide variety of conditions, but the present authors were unable to find any previous reports of Diogenes' syndrome in patients with intellectual disability.     

The economic costs of mental illness in Sweden 1975

The economic cost of mental illness in Sweden in 1975 was calculated at 11,800 million Swedish kronor. This means that mental illness accounts for 16% of the total economic cost due to disease. More than 90% of the direct health-care costs were accounted for by in-patient care in hospitals and nursing homes, of which one-third was attributable solely to schizophrenia. The loss of production due to morbidity and mortality accounts for about 60% of the economic cost of mental illness.     

Mental disorders and problematic behaviours in people with intellectual disability: future directions for research

In recent years there has been a nriajor growth of interest in the field of mental health and intellectual disability. This article outlines some of the issues that will be important to address in the coming years. The issues discussed include: the interaction of biological and environmental factors in the aetiology of behavioural and psychiatric disorders; diagnosis and classification; epidemiology; dementia; recognition of mental illness in the community; treatment; service provision; and training.     

Outcomes and costs of a community support worker service for the severely mentally ill

There has recently been an expansion of paraprofessional staff involved in the provision of care for the severely mentally ill. In this paper we shall evaluate the effects of a community support worker (CSW) service in South London. A sample of patients with severe mental illness receiving the service was assessed over a 6-month period in order to examine the effects of continuing use of CSWs on outcomes, service use and costs. During the study period there were improvements in outcome reflecting service satisfaction, needs, quality of life and social behaviour. Whilst provision of the CSW service did not lead to extra total service costs, service use and cost data suggest that CSWs are associated with the substitution of in-patient use by community-based services.     

The overweight: obesity and plasma lipids in adults with intellectual disability and mental illness

Background Previous studies in adults with intellectual disabilities (ID) have reported a higher prevalence of obesity than in the general population, and a trend to an increase in the prevalence of excess weight. However, little information is available on body weight status and lipids levels of adults with ID and co‐existing mental illness. The aim of this study was to address this information gap, by conducting a stepwise multiple regression analysis to predict BMI, thereby allowing the investigation of (semi‐)partial correlations, which assess the extent to which a particular predictor variable is associated with BMI over and above the other predictors. Methods A study of the patients with ID and psychiatric illness registered in the service. Collected data included body mass index (BMI), age, gender, the presence of additional physical conditions, residential status, mental illness and use the psychotropic medication. We analysed the lipid profile including serum cholesterol together with low‐density lipoprotein, high‐density lipoprotein (HDL), triglycerides and the serum cholesterol/HDL ratio. Data for these variables were entered into a stepwise multiple linear regression to predict BMI. Results 28% of the participants were overweight and 41% obese. Most of the obese patients were men with mild ID (P = 0.039). Level of ID (P = 0.003), gender (P = 0.001) and serum triglycerides (P = 0.026) had significant predictive value in the regression model. There were no significant differences in either the mean serum cholesterol levels or the mean triglyceride levels between those taking and those not taking first‐generation antipsychotics, second‐generation antipsychotics or anti‐epileptic medication. Conclusions The rate of obesity in our sample was higher than in previous studies. The most predictive combination of predictors to predict BMI was ID level, gender and serum triglyceride levels. Serum triglyceride and cholesterol levels did not appear to be unduly affected by first‐ or second‐generation antipsychotic medication or by antiepileptic medication.     

The effect of alcohol consumption on cost of care in severe psychotic illness: a report from the UK700 study

OBJECTIVE: Alcohol misuse in psychotic patients is common and leads to poor treatment outcome. This study examines the relationship between alcohol consumption and cost of care in patients with a severe psychotic illness. METHOD: Patient care was evaluated over 2 years for 708 patients. Patient reported alcohol consumption was evaluated at initial interview. The outcome measure was cost of care over 2 years. RESULTS: There was no difference in mean cost of care between non-drinkers, moderate and heavy drinkers. Increased alcohol consumption (measured as a continuous variable, adjusted for baseline characteristics) was associated with lower cost of care. CONCLUSION: Heavier alcohol consumers did not incur more treatment costs and may, indeed, cost less than other patients. This may reflect higher levels of drinking being associated with better overall functioning, poorer engagement with services or exclusion from services.     

Direct and indirect costs of refractory epilepsy in a tertiary epilepsy center in Germany

PURPOSE: There are only few studies on the costs of epilepsy in Germany. Therefore, we performed a pilot study to estimate the direct and indirect costs of refractory epilepsy in a German epilepsy center. METHODS: A "prevalence-based," cross-sectional convenience sample of adults with active epilepsy attending the outpatient clinic of our tertiary epilepsy center was evaluated. Seizure-free patients and patients presenting with their first seizure were excluded. Direct and indirect costs were prospectively recorded over a three-month period using questionnaires and a patient diary. Cost driving factors were identified. RESULTS: One hundred one patients were included (40.7+/-15.2 years; disease duration: 18.1+/-15.3 years; 6 patients had focal epilepsy with simple partial seizures only, 28 with complex partial seizures, 43 with secondarily generalized tonic-clonic seizures; 20 had idiopathic generalized epilepsy with generalized tonic-clonic seizures). The total costs of epilepsy per patient were in average euro 2610+/-4200 over the three-month period. Direct cost contributed 39% to the total costs. Costs of anticonvulsant medication were the main contributor to the direct costs while indirect costs were caused mainly by losses due to early retirement. Cost driving factors included higher seizure frequency, longer disease duration, ictal falls, and situationally inappropriate complex behavior during or after the seizure. CONCLUSIONS: Indirect costs were higher than direct costs in adult patients with active epilepsy attending a German epilepsy center. Medication contributed the most to the direct costs and early retirement was the main factor for the indirect costs. The costs of poorly controlled epilepsy in this German study were above average of the European costs of epilepsy.     

Acute inpatient treatment,hospitalization course and direct costs in bipolar patients with intellectual disability

To explore the impacts of intellectual disability (ID) on psychotropic medication use, length of hospital stay (LOS) and direct hospitalization costs during inpatient treatment for acute bipolar episodes, all 17,899 index hospitalizations due to acute bipolar episodes between 1998 and 2007 in Taiwan were identified from a total population health insurance claims database, amongst which 544 subjects had a concomitant diagnosis of ID. Pattern of psychotropic medication use, LOS, discharge outcome and direct costs during hospitalization were compared between bipolar patients with ID and without ID and multivariate models controlling for major cost confounders were used to explore the impacts of ID on LOS, discharge outcome and inpatient costs. The results indicated that, compared to bipolar patients without ID, bipolar patients with ID were younger, had longer LOS and received significantly lower daily equivalent dosages of antipsychotics, mood stabilizers, lithium and benzodiazepines. Significantly more bipolar patients with ID could not be discharged successfully. The longer LOS possibly reflected slower clinical stabilization, conservative use of medications and difficulty in community placement. The lower average daily reimbursements indicated that treatment of bipolar patients with ID were under-funded, whereas the higher total direct costs resulting from prolonged LOS placed greater economic straint on healthcare system. The findings support that bipolar patients with ID are clinically unique but relatively under-supported during acute hospitalization. Modifying current pharmacological intervention, health care resources allocation and community supporting structure is paramount to reducing LOS and improving hospitalization outcome.     

Development and pilot testing of a tool to calculate parental and societal costs of raising a child with intellectual disability

Background There is a lack of evidence in Canada surrounding the costs to parents and society to raise a child with intellectual disability. Knowledge of these costs is necessary to ensure appropriate governmental support to families and to assess the financial impact of new diagnostic tests and treatments.

Method We adapted 2 paper-based cost diaries into an online retrospective survey and evaluated it using a small pilot study of individuals with Down syndrome.

Results Parents completed the survey with apparent ease, giving answers requiring little clarification; they used comment fields to add data that elaborated on both financial and emotional costs. Costs appeared concordant with those reported in other countries.

Conclusion The survey successfully documents care time required, impact on employment, and other expenses. Minor modifications were made as a result of this pilot, and the survey is now available for wider use.