Health-Related Quality of Life, Costs and Treatment of Inflammatory Rheumatic Diseases in Routine Practice : With special emphasis on biological drugs

Rheumatoid arthritis (RA) and other chronic inflammatory joint diseases already begin to affect patients health-related quality of life (HRQoL) in the earliest phases of these diseases. In treatment of inflammatory joint diseases, the last two decades have seen new strategies and treatment options introduced. Treatment is started at an earlier phase; combinations of disease-modifying anti-rheumatic drugs (DMARDs) and corticosteroids are used; and in refractory cases new drugs such as tumour necrosis factor (TNF) inhibitors or other biologicals can be started. In patients with new referrals to the Department of Rheumatology of the Helsinki University Central Hospital, we evaluated the 15D and the Stanford Health Assessment Questionnaire (HAQ) results at baseline and approximately 8 months after their first visit. Altogether the analysis included 295 patients with various rheumatic diseases. The mean baseline 15D score (0.822, SD 0.114) was significantly lower than for the age-matched general population (0.903, SD 0.098). Patients with osteoarthritis (OA) and spondyloarthropathies (SPA) reported the poorest HRQoL. In patients with RA and reactive arthritis (ReA) the HRQoL improved in a statistically significant manner during the 8-month follow-up. In addition, a clinically important change appeared in patients with systemic rheumatic diseases. HAQ score improved significantly in patients with RA, arthralgia and fibromyalgia, and ReA. In a study of 97 RA patients treated either with etanercept or adalimumab, we assessed their HRQoL with the RAND 36-Item Health Survey 1.0 (RAND-36) questionnaire. We also analysed changes in clinical parameters and the HAQ. With etanercept and adalimumab, the values of all domains in the RAND-36 questionnaire increased during the first 3 months. The efficacy of each in improving HRQoL was statistically significant, and the drug effects were comparable. Compared to Finnish age- and sex-matched general population values, the HRQoL of the RA patients was significantly lower at baseline and, despite the improvement, remained lower also at follow-up. Our RA patients had long-standing and severe disease that can explain the low HRQoL also at follow-up. In a pharmacoeconomic study of patients treated with infliximab we evaluated medical and work disability costs for patients with chronic inflammatory joint disease during one year before and one year after institution of infliximab treatment. Clinical and economic data for 96 patients with different arthritis diagnoses showed, in all patients, significantly improved clinical and laboratory variables. However, the medical costs increased significantly during the second period by 12 015 (95% confidence interval, 6 496 to 18 076). Only a minimal decrease in work disability costs occurred mean decrease 130 (-1 268 to 1 072). In a study involving a switch from infliximab to etanercept, we investigated the clinical outcome in 49 patients with RA. Reasons for switching were in 42% failure to respond by American College of Rheumatology (ACR) 50% criteria; in 12% adverse event; and in 46% non-medical reasons although the patients had responded to infliximab. The Disease Activity Score with 28 joints examined (DAS28) allowed us to measure patients disease activity and compare outcome between groups based on the reason for switching. In the patients in whom infliximab was switched to etanercept for nonmedical reasons, etanercept continued to suppress disease activity effectively, and 1-year drug survival for etanercept was 77% (95% CI, 62 to 97). In patients in the infliximab failure and adverse event groups, DAS28 values improved significantly during etanercept therapy. However, the 1-year drug survival of etanercept was only 43% (95% CI, 26 to 70) and 50% (95% CI, 33 to 100), respectively. Although the HRQoL of patients with inflammatory joint diseases is significantly lower than that of the general population, use of early and aggressive treatment strategies including TNF-inhibitors can improve patients HRQoL effectively. Further research is needed in finding new treatment strategies for those patients who fail to respond or lose their response to TNF-inhibitors.

Health status of an elderly population in Sharpeville, South Africa

The objective of this cross-sectional study was a comprehensive nutrition and health assessment to provide a basis for future intervention strategies for an elderly population attending a day-care centre. Socio-demographic, health and 24-hour recall dietary intake questionnaires were administered and anthropometric and biochemical measurements taken. The results indicate that the majority of respondents had an income of between R501 and R1 000 (South African rand) per month and most of them reported an occasional lack of funds to meet basic household needs, confirming the presence of food insecurity. Daily dietary intakes (mean [+ or -] Standard Deviation [SD]) of the women were 5 395 [+ or -] 2 946 kJ energy, 47 [+ or -] 27 g protein, 28 [+ or -] 21 g fat and 196 [+ or -] 123 g carbohydrates compared to 8 641 [+ or -] 3 799 kJ, 86 [+ or -] 48 g, 49 [+ or -] 32 g and 301 [+ or -] 139 g of the men, respectively. The majority (83.6%) of the women were overweight (body mass index [BMI] [greater than or equal to] 25) or obese (BMI [greater than or equal to] 30) whilst 78% had a mid-upper arm circumference (MUAC) of [greater than or equal to] 21.7 cm. Mean intakes of micronutrients were low in comparison to reference standards and serum zinc levels were suboptimal. Obesity, hypertension and raised total serum cholesterol levels indicated an increased risk for coronary heart disease. It can be concluded that a low income, household food insecurity and risk factors associated with malnutrition and non-communicable diseases were prevalent in this elderly population. OPSOMMING Die doelwit van hierdie dwarssnitstudie was ‘n omvattende bepaling van voeding- en gesondheidstatus om as basis te dien vir toekomstige intervensiestrategieë vir ’n groep bejaardes wat ’n dagsentrum besoek. Sosiodemografiese, gesondheid- en 24-uur herroep-dieetinname vraelyste is voltooi en antropometriese en biochemiese metings is geneem. Die resultate het bevestig dat die meerderheid respondente ‘n maandelikse inkomste van tussen R501 en R1 000 (Suid-Afrikaanse rand) gehad het. Die meeste het ‘n geldtekort vir basiese huishoudelike behoeftes gerapporteer wat dui op huishoudelike voedselinsekuriteit. Daaglikse dieetinnames (gemiddeld±standaardafwyking [SA]) van die vroue was onderskeidelik 5 395±2 946 kJ energie, 47±27 g proteïen, 28±21 g vet en 196±123 g koolhidrate in vergelyking met 8 641±3 799 kJ, 86±48 g, 49±32 g en 301±139 g vir die mans. Die meerderheid (83.6%) van die vroue was oorgewig (liggaamsmassa-indeks [LMI] >25) of vetsugtig (LMI > 30) en 78% het ’n middel-bo-armomtrek (MUAC) van > 21.7 cm gehad. Gemiddelde mikronutriëntinnames was laag in vergelyking met die verwysingstandaarde en serumsink was suboptimaal. Vetsug, hipertensie en verhoogde totale serumcholesterolvlakke het op ‘n verhoogde risiko van kardiovaskulêre siekte gedui. Die resultate het dus bewys dat lae inkomste, huishoudelike voedselinsekuriteit en die risikofaktore wat met wanvoeding en leefstylsiektes geassosieer word, teenwoordig was.

Assessment of data quality in a multi-centre cross-sectional study of participation and quality of life of children with cerebral palsy

Background: SPARCLE is a cross-sectional survey in nine European regions, examining the relationship of the environment of children with cerebral palsy to their participation and quality of life. The objective of this report is to assess data quality, in particular heterogeneity between regions, family and item non-response and potential for bias. Methods: 1,174 children aged 8–12 years were selected from eight population-based registers of children with cerebral palsy; one further centre recruited 75 children from multiple sources. Families were visited by trained researchers who administered psychometric questionnaires. Logistic regression was used to assess factors related to family non-response and self-completion of questionnaires by children. Results: 431/1,174 (37%) families identified from registers did not respond: 146 (12%) were not traced; of the 1,028 traced families, 250 (24%) declined to participate and 35 (3%) were not approached. Families whose disabled children could walk unaided were more likely to decline to participate. 818 children entered the study of which 500 (61%) self-reported their quality of life; children with low IQ, seizures or inability to walk were less likely to self-report. There was substantial heterogeneity between regions in response rates and socio-demographic characteristics of families but not in age or gender of children. Item non-response was 2% for children and ranged from 0.4% to 5% for questionnaires completed by parents. Conclusion: While the proportion of untraced families was higher than in similar surveys, the refusal rate was comparable. To reduce bias, all analyses should allow for region, walking ability, age and socio-demographic characteristics. The 75 children in the region without a population based register are unlikely to introduce bias

Exploring self-rated health among adolescents : a think-aloud study

BACKGROUND: Despite extensive use of self-rated health questions in youth studies, little is known about what such questions capture among adolescents. Hence, the aim of this study was to explore how adolescents interpret and reason when answering a question about self-rated health. METHODS: A qualitative study using think-aloud interviews explored the question, "How do you feel most of the time?", using five response options ("Very good", "Rather good", "Neither good, nor bad", "Rather bad", and "Very bad"). The study involved 58 adolescents (29 boys and 29 girls) in lower secondary school (7th grade) and upper secondary school (12th grade) in Sweden. RESULTS: Respondents' interpretations of the question about how they felt included social, mental, and physical aspects. Gender differences were found primarily in that girls emphasized stressors, while age differences were reflected mainly in the older respondents' inclusion of a wider variety of influences on their assessments. The five response options all demonstrated differences in self-rated health, and the respondents' understanding of the middle option, "Neither good, nor bad", varied widely. In the answering of potential sensitive survey questions, rationales for providing honest or biased answers were described. CONCLUSIONS: The use of a self-rated health question including the word 'feel' captured a holistic view of health among adolescents. Differences amongst response options should be acknowledged when analyzing self-rated health questions. If anonymity is not feasible when answering questions on self-rated health, a high level of privacy is recommended to increase the likelihood of reliability.

Regional sustainability : how useful are current tools of sustainability assessment at the regional scale?

Sustainability assessment methods are primarily aimed at global, national or state scales. However, modelling sustainability at finer spatial scales, such as the region, is essential for understanding and achieving sustainability. Regions are emerging as an essential focus for sustainability researchers, natural resource managers and strategic planners working to develop and implement sustainability goals. This paper evaluates the effectiveness of current sustainability assessment methods – ecological footprint, wellbeing assessment, ecosystem health assessment, quality of life and natural resource availability – at the regional scale. Each of these assessment methods are tested using South East Queensland (SEQ) as a case study. It was selected because of its ecological and demographic diversity, its combination of coastal and land management issues, and its urban metropolitan and rural farm and non-farm communities. The applicability of each of these methods to regional assessment was examined using an evaluation criteria matrix, which describes the attributes of an effective method and the characteristics that make these methods useful for regional management and building community capacity to progress sustainability. We found that the methods tested failed to effectively measure progress toward sustainability at the regional scale, demonstrating the need for a new method for assessing regional sustainability.

Evaluating quality of life in hip and knee replacement: psychometric properties of the World Health Organization Quality of Life short version instrument

Objective: To evaluate the psychometric properties of the World Health Organization Quality of Life short version instrument (WHOQOL-BREF), and to determine its responsiveness in assessing early outcome after total hip or knee replacement surgery.

Methods: At baseline (entry to an orthopedic waiting list), 279 participants completed the WHOQOL-BREF instrument, Western Ontario and McMaster Universities Osteoarthritis Index (WOMAC), Assessment of Quality of Life (AQOL) instrument, Kessler Psychological Distress (K10) scale, and the modified Health Assessment Questionnaire (MHAQ). A total of 74 patients completed reassessments 3 months after surgery.

Results: The WHOQOL-BREF demonstrated acceptable internal consistency for all domains (Cronbach's = 0.76-0.84) and moderate concurrent validity for the physical and psychological domains (r = 0.67 for physical versus AQOL; r = -0.71 for psychological versus K10). Minimal ceiling or floor effects were identified at baseline or 3 months, except for the social relationships domain. The disease-specific WOMAC subscales were most responsive to change (relative efficiency [RE] 0.66-1.00). Apart from social relationships, all WHOQOL-BREF scores improved significantly after surgery. The physical domain was more responsive than the AQOL (RE 0.50 versus 0.42) and was similar to the MHAQ (RE 0.55 for MHAQ). The responsiveness of the psychological domain was similar to that of the K10 scale (RE 0.11 versus 0.08).

Conclusion: The WHOQOL-BREF has good psychometric properties for use in persons with severe joint disease, and by providing complementary information, it offers clinicians and researchers an additional tool for comprehensively assessing quality of life in this patient group.

Intervening to improve health indicators among Australian farm families

The Sustainable Farm Families project (http://www.sustainablefarmfamilies.org.au/) was a 3-year demonstration and education project designed to influence farmer behavior with respect to family health and well-being among cropping and grazing farmers in Victoria, New South Wales, and South Australia, Australia. The project was conducted by the Western District Health Service, Hamilton, Australia, in partnership with farmers; Farm Management 500 (peer discussion group); the Victorian Farmers Federation; Royal Melbourne Institute of Technology; and Land Connect. During the 3 years of the project, 128 farmers—men (70) and women (58)—were enrolled. The project utilized a combination of small group workshops, individualized health action plans, and health education opportunities to encourage farm safety and health behavior changes and to elicit sustained improvements in the following health indicators: body mass index (BMI), total cholesterol, fasting blood glucose, and blood pressure. Mean changes in these health indicators were analyzed using repeated measures analysis of variance (ANOVA) and McNemar's test compared the proportion of individuals with elevated indicators. Among participants with elevated values at baseline, the following average reductions were observed: BMI 0.44 kg/m2 (p = .0034), total cholesterol 48.7 mg/dl (p < .0001), blood glucose 10.1 mg/dl (p = .0016), systolic blood pressure 12.5 mm Hg (p < .0001), and diastolic blood pressure 5.0 mm Hg (p = .0007). The proportion of participants with elevated total cholesterol at baseline decreased after 24 months (p < .001). Such findings suggest that proactive intervention by farmer associations, rural health services, and government agencies may be an effective vehicle for promoting voluntary farm safety and health behavior change while empowering farm families to achieve measurable reductions in important health risk factors.

Mental health triage : towards a model for nursing practice

Mental health triage/duty services play a pivotal role in the current framework for mental health service delivery in Victoria and other states of Australia. Australia is not alone in its increasing reliance on mental health triage as a model of psychiatric service provision; at a global level, there appears to be an emerging trend to utilize mental health triage services staffed by nurses as a cost-effective means of providing mental health care to large populations. At present, nurses comprise the greater proportion of the mental health triage workforce in Victoria and, as such, are performing the majority of point-of-entry mental health assessment across the state. Although mental health triage/duty services have been operational for nearly a decade in some regional healthcare sectors of Victoria, there is little local or international research on the topic, and therefore a paucity of established theory to inform and guide mental health triage practice and professional development. The discussion in this paper draws on the findings and recommendations of PhD research into mental health triage nursing in Victoria, to raise discussion on the need to develop theoretical models to inform and guide nursing practice. The paper concludes by presenting a provisional model for mental health triage nursing practice.

Rehabilitation frameworks in forensic mental health

This paper examines current rehabilitation approaches to Forensic Mental Health Care. On this basis the authors identified three broad approaches to forensic mental health assessment and treatment: (1) Risk/Needs/Responsivity; (2) therapeutic models targeting individual psychopathologies; and (3) strength based models. Following a review of each model the authors conclude that strength based approaches such as the Good Lives Model has theoretical and practical advantages over the other two rehabilitation frameworks.

Identifying the core competencies of mental health telephone triage

Aims and objectives. The primary aim of this study was to identify the core competencies of mental health telephone triage, including key role tasks, skills, knowledge and responsibilities, in which clinicians are required to be competent to perform safe and effective triage.
Background. Recent global trends indicate an increased reliance on telephone-based health services to facilitate access to health care across large populations. The trend towards telephone-based health services has also extended to mental health settings, evidenced by the growing number of mental health telephone triage services providing 24-hour access to specialist mental health assessment and treatment. Mental health telephone triage services are critical to the early identification of mental health problems and the provision of timely, appropriate interventions. In spite of the rapid growth in mental health telephone triage and the important role these services play in the assessment and management of mental illness and related risks, there has been very little research investigating this area of practice.
Design. An observational design was employed to address the research aims.
Methods. Structured observations (using dual wireless headphones) were undertaken on 197 occasions of mental health telephone triage over a three-month period from January to March 2011.
Results. The research identified seven core areas of mental health telephone triage practice in which clinicians are required to be competent in to perform effective mental health telephone triage, including opening the call; performing mental status examination; risk assessment; planning and action; termination of call; referral and reporting; and documentation.
Conclusions. The findings of this research contribute to the evidence base for mental health telephone triage by articulating the core competencies for practice. Relevance to clinical practice. The mental health telephone triage competencies identified in this research may be used to define an evidence-based framework for mental health telephone triage practice that aims to improve the quality, consistency and accuracy of telephone-based mental health triage assessment.

Proxy-reported health-related quality of life of patients with juvenile idiopathic arthritis: Pediatric rheumatology international trials organization multinational quality of life cohort study

Objective. To investigate the proxy-reported health-related quality of life (HRQOL) and its determinants in patients with juvenile idiopathic arthritis (JIA).Methods. In this multinational, multicenter, cross-sectional study, HRQOL of patients with JIA was assessed through the Child Health Questionnaire (CHQ) and was compared with that of healthy children of similar age from the same geographic area. of joint inflammation, Childhood Health Assessment Questionnaire (CHAQ), and erythrocyte sedimentation rate.Results. A total of 6,639 participants (3,324 with JIA and 3,315 healthy) were enrolled from 32 countries. The mean SD physical and psychosocial summary scores of the CHQ were significantly lower in patients with JIA than in healthy children (physical: 44.5 +/- 10.6 versus 54.6 +/- 4.0, P < 0.0001; psychosocial: 47.6 +/- 8.7 versus 51.9 +/- 7.59 P < 0.0001), with the physical well-being domain being most impaired. Patients with persistent oligoarthritis had better HRQOL compared with other subtypes, whereas HRQOL was similar across patients with systemic arthritis, polyarthritis, and extended oligoarthritis. A CHAQ score > 1 and a pain intensity rating > 3.4 cm on a 10-cm visual analog scale were the strongest determinants of poorer HRQOL in the physical and psychosocial domains, respectively.Conclusion. We found that patients with JIA have a significant impairment of their HRQOL compared with healthy peers, particularly in the physical domain. Physical well-being was mostly affected by the level of functional impairment, whereas the intensity of pain had the greatest influence on psychosocial health.

Oral health of the elderly with Alzheimer's disease

Objective: The objective of this study was to describe the oral health of elderly people diagnosed with Alzheimer's disease (AD). Study Design: Thirty elderly subjects with AD (mild, moderate, and severe) and 30 without AD (controls) were included in the study. Volunteer-reported oral health data were collected using the General Oral Health Assessment Index (GOHAI). Demographic and oral characteristics were assessed, including the number of natural teeth; number of decayed, missing, and filled teeth (DMTF); oral health index (OHI); removable prosthesis conditions; and oral pathologies. Results: GOHAI values were similar for both groups. Compared with the controls, the subjects with AD had a higher age, DMTF, OHI, and number of oral pathologies and a lower educational level and number of natural teeth. Conclusions: Elderly subjects with AD had poorer oral health than those without the disease. Despite the positive self-perception of their oral health, the oral health of subjects with AD tended to decline as their disease progressed. © 2012 Elsevier Inc.

Validation of a measuring instrument for the perception of oral health in women

Conselho Nacional de Desenvolvimento Científico e Tecnológico (CNPq)

Relationship Between Oral Health-Related Quality of Life, Oral Health, Socioeconomic, and General Health Factors in Elderly Brazilians

Objectives To assess the impact of oral health on quality of life in elderly Brazilians and to evaluate its association with clinical oral health measures and socioeconomic and general health factors. Design Cross-sectional study. Setting Population-based cohort study on health, well-being, and aging. Participants Eight hundred fifty-seven participants representing 588,384 community-dwelling elderly adults from the city of Sao Paulo, Brazil. MeasurementS Self-perceived impact of oral health on quality of life was measured using the Geriatric Oral Health Assessment Index (GOHAI), with scores categorized as good, moderate, or poor, indicating low, moderate, and high degrees of negative impact on quality of life, respectively. Results Nearly half of the individuals had good GOHAI scores (44.7% of overall sample, 45.9% of dentate participants, and 43.4% of edentulous participants). In the overall sample, those with poor self-rated general health and a need for dental prostheses were more likely to have poor and moderate GOHAI scores. Individuals with depression were significantly more likely to have poor GOHAI scores. No socioeconomic variables were related to the outcome, except self-perception of sufficient income, which was a protective factor against a poor GOHAI score in dentate participants. Conclusion Moderate and high degrees of negative impact of oral health on quality of life were associated with general health and clinical oral health measures, independent of socioeconomic factors.