La evaluación de la calidad de vida en personas con demencia

Quality of life (QoL) is one of the most important outcome variables in the study of the efficacy of interventions with people with dementia. However, its assessment is difficult 1) because it is a complex construct for which there is no unified theoretical or conceptual approach, and 2) because of the inherent difficulties in the cognitive impairments of the people under study. In this work different methods and instruments to this end are reviewed, and related findings are discussed. It is important to take into account the subjective view of the assessed person, as assessments done by proxies tend to underestimate QoL. In spite of the need for further development in this field, it is concluded that the instrument of choice is the QOL-AD, as it is change-sensitive, it correlates with health measurements, it is translated into several languages and it can be administered to people with low MMSE scores.     

The importance of oral health to older people's quality of life

Objectives This study was designed to determine whether older people perceive oral health as being important to Quality of Life (QoL) and if so, to identify the most important ways in which their lives are affected. In addition, to identify if subgroups of older people perceive its importance differently. Design: Nationwide qualitative face to face interviews with older people were carried out utilising the Office for National Statistics Omnibus survey in Great Britain. Subjects and methods 454 adults aged 65 or older took part in this study, part of a random probability sample of adults in the UK. Setting Respondents were interviewed in their homes. Results 72% (313) perceived their oral health status as important to their QoL through a variety of physical, social and psychological ways. Most frequently its impact on function: eating (29%, 126) and symptoms: comfort (14%, 59) were considered most important. Gender and social class variations were apparent (P<0.05). Conclusion Older people perceive oral health as being important to life quality in a variety of different ways. There are significant social class and gender variations which must be taken into consideration when assessing oral health needs of older people.     

Het verklaren van verschillen in ervaren kwaliteit van leven van kwetsbare ouderen: een ‘mixed-method’ onderzoek

Most research on (multidimensional) frailty focuses on deficits and risks of adverse outcomes. However, frail older people can still report positive outcomes, such as a relatively high QoL. In order to develop more positively oriented prevention strategies, this exploratory study aimed (a) to identify characteristics related to QoL among frail older people; and (b) to explain discrepancies between higher and lower levels of QoL, with a specific focus on strengths frail older people with a higher QoL still may have. Quantitative and qualitative data was gathered by means of semi-structured interviews with Flemish community-dwelling, frail older people with higher (n?=?16) and lower QoL levels (n?=?18). Quantitative analyses showed that frail older people with a higher QoL were older, had lower levels of psychological frailty, and reported higher meaning in life compared to those with a lower QoL. Outcomes of qualitative analysis showed that participants in the high QoL subgroup adapted more effectively to difficulties, had more things in prospect, performed more activities, and were more satisfied with their social network compared to the low QoL subgroup. To conclude, this exploratory study suggests possibilities to promote and improve QoL by strengthening specific resources among frail older people.Please note that an English version of this article has been published in BMC Geriatrics: van der Vorst A, Zijlstra GAR, De Witte N, Vogel RGM, Schols JMGA, Kempen GIJM, D?SCOPE Consortium. Explaining discrepancies in self-reported quality of life in frail older people: a mixed-methods study. BMC Geriatr. 2017;17(1): 251.  https://doi.org/10.1186/s12877-017-0641-y.     

Quality of life in the long-term treatment and the role of second-generation antipsychotics

Health-related quality of life (QoL) represents important measure of treatment outcome in mental disorders. Numerous studies indicate that QoL of people with schizophrenia and bipolar disorder is similar to that of patients with chronic physical conditions. It has been shown that schizophrenia patients can themselves reliably assess their QoL; in addition to the objective scales various self-reporting instruments are used. Patients with bipolar disorder have QoL consistently higher than patients with schizophrenia and similar to that found in people with unipolar depression. Quality of life can be negatively affected by drug-induced side-effects and subjective treatment response. The second-generation antipsychotics (SGA) have superior efficacy on QoL over classical antipsychotics in approximately half of the studies with schizophrenia; in the other half those groups are comparable. However, in none of the trials novel antipsychotics were inferior. All SGA (clozapine, olanzapine, risperidone, amisulpride, quetiapine, ziprasidone, or remoxipride) have been found to be beneficial for patients well-being. The most investigated drugs that convincingly improve QoL in schizophrenia are olanzapine and risperidone (including depot form). Results of several studies indicate that individual antipsychotics may differ in their effects on QoL, with suggested superiority of olanzapine. In bipolar disorder, SGA consistently showed their superiority over placebo in effects on QoL. The most studied SGA in bipolar disorder is olanzapine. More long-term controlled double-blind trials are needed to definitively uphold superiority and different effects of individual SGA on QoL of patients with schizophrenia and bipolar disorder.     

BMI and Waist Circumference as Predictors of Well‐being in Older Adults: Findings From the English Longitudinal Study of Ageing

The aim of this study is to examine the association of BMI and waist circumference (WC), with a quality of life (QoL) indicator designed for older ages (CASP19), and with depressive symptoms (Centre for Epidemiologic Studies Depression Scale). We included 8,688 individuals aged ≥52 years who participants of Wave 2 (2004–2005) and Wave 3 (2006–2007) of the English Longitudinal Study of Ageing (ELSA). To explore cross‐sectional relationships (2004–2005), we fitted regression models for BMI and WC (included simultaneously) as our predictors of QoL and depressive symptoms adjusted for covariates. To explore longitudinal relationships, BMI and waist at baseline (2004–2005) were related to the each outcome variable measured at follow‐up (2006–2007), and adjusted for baseline characteristics (2004–2005). For a given BMI, larger WC was associated with lower QoL and higher risk of depressive symptoms for women in cross‐sectional and longitudinal analyses. By contrast for a given WC increased BMI for women was positively associated with QoL and lower odds of depressive symptoms. In men, for a given BMI, increased WC was related to QoL only cross‐sectionally; neither WC nor BMI at baseline were associated with depressive symptoms (cross‐sectionally or longitudinally). In conclusion among older people, for a given BMI, increased WC was related with higher risk of poor QoL and, for women, of depressive symptoms; whereas for a given WC, increased BMI had a protective effect on QoL for women.     

Self-help materials for the prevention of smoking relapse: study protocol for a randomized controlled trial

Background

In clinical trials in childhood asthma, outcomes reflecting short-term disease activity are frequently measured, whilst functional status, quality of life (QoL), and long-term treatment effects are rarely assessed. There is also non-uniformity across studies in the selection and measurement of outcomes within these domains. The development of a core outcome set has the potential to reduce heterogeneity between trials, lead to research that is more likely to have measured relevant outcomes, and enhance the value of evidence synthesis by reducing the risk of outcome reporting bias and ensuring that all trials contribute usable information.

Methods

Paediatricians and specialist nurses, identified through the British Paediatric Respiratory Society, completed a two-round Delphi survey. Separate cohorts of parents of children younger than 18?years, recruited in clinics, participated in each round. Young people with asthma, aged at least 13?years, participated in the first round. Outcomes were identified separately for preschool and school-aged children. We identified outcomes considered important in routine clinical assessment by clinicians and parents/young people. In round 1, 46 clinicians suggested outcomes they considered important when deciding whether to adjust a child??s asthma therapy regime, and 49 parents/young people were asked, using open questions, how they judged whether their child??s (for young people, their own) asthma therapy was appropriate. Two researchers independently classified responses into appropriate, corresponding outcomes. In round 2, 43 clinicians and 50 parents scored, from 0?C4, the importance of each outcome suggested by at least 10?% of round 1 responders and selected the three most important.

Results

The most important outcomes, when making shared decisions about regular therapies for school-aged and preschool children with asthma, were daytime and nocturnal symptoms, exacerbations, QoL, and mortality. Results from parents and clinicians were generally concordant, but parents placed more emphasis on long-term treatment effects.

Conclusions

We have developed a methodology to identify outcomes of most relevance to clinicians, parents, and young people when evaluating regularly administered therapies for asthma. Daytime and nocturnal symptoms, exacerbations, QoL, and mortality are particularly important outcomes that should be measured and reported in all clinical trials of regular therapies for children with asthma.     

Factors associated with self and informant ratings of the quality of life of people with dementia living in care facilities: a cross sectional study

Background

There is no consensus regarding the optimal approach to assessment of the quality of life of people with dementia. We undertook the present study to describe and determine the factors associated with ratings of the quality of life of a cohort of people with dementia living in a residential care facility.

Methodology/Principal Findings

351 people with dementia living in residential care facilities, and their staff and family informants participated in this cross sectional observational study. Quality of life was measured using self (Quality of Life in Alzheimer''s Disease [QoL-AD] scale), and informant (QoL-AD and Alzheimer''s Disease Related QoL Scale) reports. 226 people (64%) with dementia (median MMSE 17; 12–21) were able to self rate the QoL-AD scale and these subjects'' ratings were compared to ratings by staff and family. Both staff and family informant ratings of the QoL-AD underestimated self ratings (mean difference −7.8, 95% CI −8.8, −6.7 for staff rated QoL-AD; and mean difference −7.2, 95% CI −8.5, −6.0 for family rated QoL-AD). Self ratings of QoL were lower among people who were restrained, had fallen or had pain. Informant ratings of the QoL of the participants with dementia were consistently and significantly lower for people with severe cognitive impairment, who had fallen, had presence of neuropsychiatric symptoms, or where care giver distress was present. Documented restraint, reported pain and neuropsychiatric symptoms were independently associated with lower self rating of the QoL-AD in multivariate models. Cognitive impairment, case conferencing, hospitalizations and neuropsychiatric symptoms were found to be independently associated with staff rated ADRQL.

Conclusions

The majority of people with dementia living in residential care facilities can rate their own QoL. Informant ratings underestimate self ratings of QoL of people with dementia, and appear to be associated with factors which are not associated with self ratings.     

The potential benefits of dental implants on the oral health quality of life of people with Parkinson’s disease

Objective: To investigate how dental implants impact on the oral health quality of life of people with Parkinson’s disease (PD). Background: PD is a progressive neurological disorder that can result in a number of oral health care challenges, including denture difficulties. Lack of evidence related to use of implants in PD prompted this study to investigate their use in this group of people. Materials and methods: Nine people with PD were provided with either fixed or removable prostheses using Astra‐Tech implants. Participants completed the socio‐dental questionnaire, ‘The Dental Impact on Daily Living Assessment’ (DIDL) prior to implant surgery, and at 3 and 12 months after provision of the final prosthesis. DIDL comprises two components – the Oral Health Quality of Life Inventory (OH‐QoL) and the Self‐Reported Assessment of Oral Health and Functional Status (SROH). Results: Nine people (with an age range of 54–77 years) had implants placed. The implant success rate was 85 and 81% in the maxilla and mandible, respectively. The OH‐QoL and SROH results (analysed using the one‐way analysis of variance and pairwise multiple comparisons) demonstrated a significant improvement in the domains of eating and satisfaction with the prosthesis after 3 months, which was maintained at the twelve month review. The OH‐QoL indicated a gradual improvement in oral well‐being over the 12‐month period. Conclusion: The oral health quality of life of people with PD was improved by the use of dental implants, indicating this as a viable treatment option.     

Quality of life during dendritic cell vaccination against metastatic renal cell carcinoma

Patients with metastatic renal cell carcinoma (RCC) undergoing cytokine or targeted therapies may show a remarkable decline in quality of life (QoL). We wanted to evaluate QoL in patients with metastatic RCC undergoing therapeutic vaccination with dendritic cells (DCs). In a cross-sectional analysis, QoL was therefore assessed in RCC patients participating in three consecutive clinical trials of DC vaccination. Before the first and after the third vaccination with DCs, patients completed a QoL questionnaire (EORTC QLQ-C30, version 3). Data were transformed into scale scores and analysed using SPSS 12.0 software. Mean values of the resulting scores obtained before and after DC vaccination were compared using students t test and Wilcoxon rank-sum test. P < 0.05 was considered statistically significant. The questionnaire was completed by 55 of 71 patients (compliance rate, 77.5%) who had a median age of 58.7 years (from 30 to 75 years). No significant reductions in functioning scales including physical, emotional and social criteria as well as symptom scores, which assess typical symptoms of tumour therapies, were observed indicating that QoL remained high during DC vaccination. Significant correlations were found between overall survival and functional as well as symptom scores. Our data indicate that DC vaccination, which is a personalised treatment modality, maintains QoL and thus represents an attractive nontoxic treatment option for patients with metastatic RCC. It will be important to identify the most effective conditions of DC vaccination including combinations with other therapeutics to maximise clinical efficacy while still preserving QoL.     

Impact of Response Shift on Time to Deterioration in Quality of Life Scores in Breast Cancer Patients

Background

This prospective multicenter study aimed to study the impact of the recalibration component of response-shift (RS) on time to deterioration (TTD) in health related quality of life (QoL) scores in breast cancer (BC) patients and the influence of baseline QoL expectations on TTD.

Methods

The EORTC-QLQ-C30 and BR-23 questionnaires were used to assess the QoL in a prospective multicenter study at inclusion (T0), at the end of the first hospitalization (T1) and, three (T2) and 6 months after the first hospitalization (T3). Recalibration was investigated by the then-test method. QoL expectancy was assessed at diagnosis. Deterioration was defined as a 5-point decrease in QoL scores, considered a minimal clinically important difference (MCID). TTD was estimated using the Kaplan-Meier method. Cox regression analyses were used to identify factors influencing TTD.

Results

From February 2006 to February 2008, 381 women were included. Recalibration of breast cancer patients'' internal standards in the assessment of their QoL had an impact on TTD. Median TTD were significantly shorter when recalibration was not taken into account than when recalibration was taken into account for global health, role-functioning, social-functioning, body-image and side effects of systemic therapy. Cox multivariate analyses showed that for body image, when recalibration was taken into account, radiotherapy was associated with a shorter TTD (HR: 0.60[0.38–0.94], whereas, no significant impact of surgery type on TTD was observed. For global health, cognitive and social functioning dimensions, patients expecting a deterioration in their QoL at baseline had a significantly shorter TTD.

Conclusions

Our results showed that RS and baseline QoL expectations were associated with time to deterioration in breast cancer patients.     

Quality of life assessment of growth hormone deficiency in adults (QoL-AGHDA): comparison of normative reference data for the general population of England and Wales with results for adult hypopituitary patients with growth hormone deficiency

BACKGROUND/AIM: Age- and gender-specific reference values for the quality of life (QoL) measures used in assessing the impact of growth hormone deficiency (GHD) are important. The objective of this study was to develop such data for the QoL-AGHDA instrument for the population of England and Wales and to demonstrate the QoL deficit in patients with GHD. METHODS: For the purpose of this study, a questionnaire was developed that contained the EurQoL EQ-5D, QoL-AGHDA, questions recording an individual's general situation and social functioning, and a self-reported five-point rating scale of general health. The questionnaire was mailed out to a sample of 1,190 individuals drawn from the general population of England and Wales. Corresponding data for 836 patients were retrieved from KIMS (Pfizer International Metabolic Database). The postal survey data were weighted to ensure that they were representative of the general population. RESULTS: The mean weighted QoL-AGHDA scores for the general population were 6.2 and 7.1 for men and women, respectively, compared with 13.6 and 15.7 for patients. For both males and females the differences in mean QoL-AGHDA scores between the general population and patients were statistically significant for all age categories (p < 0.01). In the general population the mean QoL-AGHDA score for each category of self-assessed health status increased progressively, indicating a poorer QoL as health status declined. CONCLUSIONS: This study reports QoL-AGHDA normative values for the population of England and Wales and confirms the extent of QoL impairment in patients with GHD in comparison with the general population.     

Toward Meeting the Needs of Homeless People with Schizophrenia: The Validity of Quality of Life Measurement

Objective

To provide new evidence regarding the suitability of using quality of life (QoL) measurements in homeless people with schizophrenia, we assess the acceptability and psychometric properties of a specific QoL instrument (S-QoL 18) in a population of homeless people with schizophrenia, and we compare their QoL levels with those observed in non-homeless people with schizophrenia.

Methods

This multi-centre prospective study was conducted in the following 4 French cities: Lille, Marseille, Paris and Toulouse. Two hundred and thirty-six homeless patients with schizophrenia were recruited over a 12 month-period. The S-QoL 18 was tested for construct validity, reliability, external validity and sensitivity to change. The QoL of the 236 homeless patients was compared with 236 French age- and sex-matched non-homeless patients with schizophrenia.

Results

The eight-factor structure of the S-QoL 18 was confirmed by confirmatory factor analysis (RMSEA = 0.035, CFI = 0.95, GFI = 0.99 and SRMR = 0.015). Internal consistency, reliability and sensitivity to change were satisfactory. External validity was confirmed via correlations between S-QoL 18 dimension scores and SF-36, symptomatology and recovery scores. The percentage of missing data did not exceed 5%. Finally, homeless patients had significantly lower QoL levels than non-homeless patients with schizophrenia.

Conclusions

These results demonstrate the satisfactory acceptability and psychometric properties of the S-QoL 18, suggesting the validity of QoL measurement among homeless patients with schizophrenia. Our study also reported that QoL levels in homeless patients with schizophrenia were dramatically low, highlighting the need for new policies to eradicate homelessness and tackle poverty.     

Smiles when sharing

One of the proposed functions of human smiling is to advertise cooperative dispositions and thereby increase the likelihood that a social partner would invest resources in a relationship. In particular, smiles involving an emotional component would be honest signals of altruistic dispositions because they are not easy to produce voluntarily. In this study, 60 people were covertly filmed while interacting with a friend in two conditions: control and sharing. Smiles were classified into Duchenne (spontaneous) and non-Duchenne smiles. Participants also completed a series of questionnaires, including the Altruism Scale and a self-report questionnaire of emotional state. Interestingly, Duchenne smiles were displayed at higher rates in the sharing situation as opposed to the control situation, whereas non-Duchenne smiles were unaffected by the type of interaction. Furthermore, Duchenne smiles in the sharing interaction were positively affected by a measure of altruism. Self-reported emotional states did not vary between conditions and were poorly related to smiling. This study shows that the Duchenne smile is relevant to situations that involve the sharing of material resources because it would reliably advertise altruistic intentions. The Duchenne smile could therefore be an important signal in the formation and maintenance of cooperative relationships.     

Quality of life and chronotherapy

The importance of evaluating patient's quality of life (QoL) in clinical practice and research is recognized clearly in oncology. In the advanced phase of disease such an evaluation represents an endpoint as important as survival. Quality of life is both a subjective and multidimensional concept evaluated mainly by validated questionnaires. In colorectal trials involving advanced stage disease the effects of different chemotherapy treatments on QoL were evaluated. Almost all the studies found no deterioration in QoL during chemotherapy. The European Organization for the Research and Treatment of Cancer (EORTC) Chronotherapy Study Group utilized three different approaches to assess QoL. The first centered on the stability of QoL during a 6mon treatment period in patients undergoing chronotherapy. The second centered on research of the biological and clinical determinants of QoL involving features of the circadian activity rhythm and patient survival and the relationship between QoL and patient performance status, response to therapy, and psychosocial variables as well as drug-induced toxicity. The third centered on the clinical effectiveness of psychological intervention on patients undergoing chronotherapy to improve psychosocial status during treatment. This papers reviews the results of EORTC Chronotherapy Group studies on QoL.     

Quality of life and chronotherapy

The importance of evaluating patient's quality of life (QoL) in clinical practice and research is recognized clearly in oncology. In the advanced phase of disease such an evaluation represents an endpoint as important as survival. Quality of life is both a subjective and multidimensional concept evaluated mainly by validated questionnaires. In colorectal trials involving advanced stage disease the effects of different chemotherapy treatments on QoL were evaluated. Almost all the studies found no deterioration in QoL during chemotherapy. The European Organization for the Research and Treatment of Cancer (EORTC) Chronotherapy Study Group utilized three different approaches to assess QoL. The first centered on the stability of QoL during a 6mon treatment period in patients undergoing chronotherapy. The second centered on research of the biological and clinical determinants of QoL involving features of the circadian activity rhythm and patient survival and the relationship between QoL and patient performance status, response to therapy, and psychosocial variables as well as drug-induced toxicity. The third centered on the clinical effectiveness of psychological intervention on patients undergoing chronotherapy to improve psychosocial status during treatment. This papers reviews the results of EORTC Chronotherapy Group studies on QoL.     

Frail elderly. Identification of a population at risk

In the future the number of frail independently living older people will continue to increase. It is unclear however, which people are meant exactly by those frail elderly. The aim of this article is to discuss the concept of frailty and its adequacy in identifying the frail elderly population. To this end, a literature search has been performed regarding the conceptual and operational definitions of frailty. The results show that frailty often is put on a continuum opposite to vitality. It is emphasised that the process of frailty can be modified or (partly) reversed. Focusing on this reversibility is important because frail elderly have a higher risk for adverse outcomes such as dependence, hospitalization, falls and mortality. After studying the conceptual and operational definitions it is concluded that no actual definition meets the criteria for a successful definition of frailty. Frailty is predominantly defined in terms of physical loss. This may lead to fragmentation of care with lack of an integral approach. In a follow-up study it will be tried to develop consensus on a conceptual and operational definition of frailty.     

Associations of Quality of Life with Service Satisfaction in Psychotic Patients: A Meta-Analysis

Background

Quality of life (QoL) has gained increasing attention as a desired outcome of psychosocial treatments targeting psychotic patients. Yet, the relationship between the patients’ satisfaction with services and QoL has not been clearly established, perhaps due to the multidimensionality of the QoL concept and the variability in its assessment.

Aim

This is the first systematic meta-analysis of all available evidence assessing the relationship between QoL and service satisfaction. Methods: In all, 19 studies reporting data of 21 independent samples (N = 5,337) were included in the present meta-analysis. In moderator analyses, effects of age, sex, diagnoses (schizophrenia vs. other psychoses), treatment context (inpatients vs. outpatients), study design (cross-sectional vs. longitudinal), and QoL domain (subjective vs. health-related) were examined.

Results

Analyses revealed a highly significant medium-sized effect (r = .30, p < .001) for the associations of QoL and service satisfaction. Effect sizes were significantly stronger for subjective than health-related quality of life (r = .35 vs. r = .14, respectively). Moreover, associations with subjective QoL remained largely robust when accounting for moderating variables, although there was a trend of stronger associations for outpatients compared to inpatients. In contrast, effect sizes for health-related QoL were small and only observable for samples with longitudinal designs.

Conclusion

Associations between QoL and service satisfaction appear to be robust but are differentiated in regard to QoL domain. Our findings suggest that agents responsible for service design and implementation need to take the patients’ perception of the service adequacy for achieving QoL enhancement into account.     

Enfermedad de Alzheimer y calidad de vida del cuidador informal

Background

Along with an ageing population, a higher incidence of chronic diseases leads to increasingly complex health profiles. The relationship between survival, dependence, and social and demographic trends affecting caregiving, has led to an increase in the negative consequences associated with care provision. In this context, an assessment needs to be made on the impact that caregiving has on the well-being of the caregivers. The main aim of this article is to study the factors that determine the Quality of Life (QoL) of those who provide informal care to people suffering from Alzheimer's disease (AD).

Huron Smith's ethnobotany of the Hocąk (Winnebago)

The Hocak, commonly known as the Winnebago, are one of the original tribes in the present state of Wisconsin. The field notes of Huron Smith, compiled in the late 1920s and early 1930s, document the extensive use of plant materials by Hocak people. Smith's notes contain references to 199 vascular plant species in 74 families, with recorded uses for 153 of these species. Medicinal plants (with 117 species) comprise the largest category, followed by food (37 species), and fiber and material uses (22 species). Smith's work is unique for its time because he thoroughly explored the tribal uses of the plants in addition to collecting voucher specimens and photographic plates, and because it remains the most extensive Hocąk ethnobotanical study. Added to Smith's other works of tribes in Wisconsin (Menominee, Meskwaki, Ojibwe, and Potawatomi), the Hocak ethnobotany broadens the cultural base of his regional compilation of Native North American plant uses. In addition, this is an important body of information for the Hocąk people and those interested in their use of plants.     

Japanese attitudes towards foreign languages

The purpose of this study is to clarify Japanese attitudes towards foreign languages based on the kinds and changes of TV and radio programs that aired on the Japanese national broadcasting station (NHK) between 1955 and 2000. Foreign language programs are classified into three groups according to their content: 1) cultivation, 2) education, or 3) communication. For Japanese people, foreign languages are the measures of intelligence and intellect. Studying a foreign language is considered a sign of intelligence whether or not it is used for actual communication. The number of foreign language programs has increased tremendously since 1965 in part because the global economy has brought many countries in such close contact. Since 1990, programs for the purpose of communication have increased because of the necessity to communicate with foreign people. Japanese attitudes towards studying foreign languages have been changing gradually from an intellectual purpose to a communication purpose.