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This article describes how nurses can use the Q methodology to include head and neck cancer patients in research. These patients are often excluded from participating in research based on temporary or permanent voiceless, disfigurement, or impaired communication. Q methodology is defined as the method for the study of subjectivity and related procedures seem to facilitate the participation of head and neck cancer patients. As so, this inclusive dimension should be taken into consideration in research project design also as an ethical aspect of the study, in particular when involving these patients or others in similar conditions.

OBJECTIVE This article describes the adequacy of the Q methodology as a new option for the validation of nursing diagnoses related to subjective foci. METHODS Discussion paper about the characteristics of the Q methodology. FINDINGS This method has been used in nursing research particularly related to subjective concepts and includes both a quantitative and qualitative dimension. CONCLUSIONS The Q methodology seems to be an adequate and innovative method for the clinical validation of nursing diagnoses. IMPLICATIONS FOR PRACTICE The validation of nursing diagnoses related to subjective foci using the Q methodology could improve the level of evidence and provide nurses with clinical indicators for clinical reasoning and for the planning of effective interventions. OBJETIVO Descrever a adequacao da metodologia Q como uma nova opcao para a validacao clinica de diagnosticos de enfermagem relacionados com focos subjetivos. METODOS Artigo de discussao sobre as caracteristicas da metodologia Q. RESULTADOS Este metodo tem sido utilizado na pesquisa em enfermagem relacionada com conceitos subjetivos e inclui em simultâneo uma vertente qualitativa e quantitativa. CONCLUSOES A metodologia Q parece ser uma opcao metodologica adequada para a validacao clinica de diagnosticos de enfermagem. IMPLICACOES PARA A PRATICA A utilizacao da metodologia Q na validacao clinica de diagnosticos de enfermagem relacionados com focos subjetivos pode melhorar o nivel e evidencia e facilitar o raciocinio clinico dos enfermeiros, ao providenciar indicadores clinicos tambem necessarios ao desenvolvimento de intervencoes efetivas.

Risk factors associated with admission of people with dementia to long-term care institutions need to be identified to support health-care professionals in dementia care at home. An explorative study, combining quantitative and qualitative data collection methods, was performed in people with dementia in Spain. The sample, consisting of people with dementia receiving formal care from health-care professionals but at risk of institutionalisation, and their informal care-givers; and people with dementia recently admitted to a long-term care institution, and their informal care-givers, was interviewed between November 2010 and April 2012. Perceived reasons for admission were determined through an open-ended question put to both groups. Presumed risk factors were collected with validated questionnaires and analysed using bivariate analysis. A total of 287 people with dementia and informal care-givers were studied. Reasons given by the institutionalised group were mostly related to the level of dependency of the person with dementia. People recently admitted to a long-term care institution had more cognitive impairment, a greater degree of dependency and poorer quality of life than those still living at home. Home-care services in Spain need to develop or improve interventions based on the risk factors identified in this study: informal care-giver profile, high cognitive impairment, high level of dependency and the poor quality of life of the person with dementia.

Background Prevalence of dementia in developed countries is high. Optimising the quality of life (QoL) of both patient and caregiver is the most important treatment goal. The main objective is to measure the QoL of people with dementia living at home or in long-term care institutions (LTCI) and identify related factors. Methods Cross-sectional study. Data of people with dementia who lived at home or who had been recently admitted to an LTCI in Spain was included. QoL was assessed by people with dementia themselves and their proxies using the ‘Quality of Life-Alzheimer's Disease scale' (QoL-AD). Clinical, cognitive and neuropsychiatric data were collected. Results In total, 287 PwD were included; 113 from LTCIs (39.4%) and 174 from home care (HC) (60.6%). Mean age was 83.2 (7.1) years; 201 (70%) patients were women and mean of the MMSE score was 15.1 (5.6). A total of 160 (55.7%) PwD had completed data for both QoL self-reported and proxy-reported (35.4% from LTCI and 69% from HC; P b : –0.534, P =0.001) and neuropsychiatric symptoms ( b : –0.223, P =0.004) were independently associated with self-reported QoL. The Charlson index ( b : –0.637, P =0.032), Katz ( b : 0.481, P =0.019) and Cornell index score ( b : –0.367, P =0.001) were independently associated with proxy-reported QoL. Conclusions Low depressive and neuropsychiatric symptoms were independently associated with better self-reported QoL. On the other hand, low comorbidity, better functional status and low depressive symptoms were independently associated with QoL reported by the informer caregivers.

Background Due to the high prevalence of dementia, health care needs are increasing beyond existing formal resources. In Spain, it is the family that takes care of this disease. Aims To analyze the direct (health and non-health) and indirect economic costs related to care of people with dementia living with their informal caregiver in the home care/community environment, from the perspective of illness severity, associated comorbidity and social impact. Design Multicentric, descriptive study. Setting Three primary care public health centers associated with Hospital Clinic, Barcelona (Spain). Participants Patients over 65 years old with a diagnosis of dementia, and included in a home care program. Inclusion criteria People with a diagnosis of dementia made by a specialist neurologist; aged 65 years or older; a score ≤24 on the Mini-Mental State Examination, and identification of an informal caregiver. Exclusion criteria Patients unable to identify an informal caregiver, and those with primary psychiatric pathology or Korsakoff's syndrome. Measurements Use of Resources in Dementia to assess costs; Mini-Mental State Examination to evaluate cognitive capacity; Katz-Index to measure functional capacity; Neuropsychiatric Index for neuropsychiatric symptoms, and the Charlson-Index for comorbidity. Data collection took place between November, 2010 and April, 2012. Results The average estimated monthly care costs for people with dementia in the home setting are 1956.2€ (SD 1463.9). Informal care was the major contributor to this with a mean estimated cost of 1214.86 (SD 902.68)€/month. Greater illness severity, dependency in activities of daily living, comorbidity and behavioral disturbance are associated with higher costs. Behavioral disturbance appeared as the only factor independently associated with cost in dementia care. The group of people with dementia with severe behavioral disturbance requires the most care resources with an average cost of 2545.2 (SD 1753.2)€/month. Conclusions There is a direct association between dementia severity and increased costs. In addition, informal caregivers looking after people with dementia in Spain represent an important social cost. The independent factor associated with an increase in the total costs of patient care was neuropsychiatric symptoms.

Prescription patterns of non-vitamin K antagonist oral anticoagulants (NOACs) are unknown among primary care physicians, where most patients with nonvalvular atrial fibrillation (NVAF) are diagnosed and followed up. The goal of this study was to evaluate overdosing and underdosing of NOACs in patients with NVAF followed up in primary care and determine their clinical predictors.This multicenter cross-sectional study included all patients with NVAF followed up in 13 primary care units in the center region of Portugal. Patients receiving antithrombotic regimens other than NOACs and patients with missing data were excluded.The study included 858 patients with NVAF on an NOAC regimen. Overall, 30.3% were prescribed an off-label dosage (25.4% with infratherapeutic dosing [ITD] and 4.9% with supratherapeutic dosing). Chronic kidney disease (odds ratio, 14.0; 95% CI, 5.4-36.5; P 0.001) and female sex (odds ratio, 2.6; 95% CI, 1.2-5.7; P 0.001) were independent predictors of supratherapeutic dosing. We also found a significant effect of chronic kidney disease on ITD (odds ratio, 0.22; 95% CI, 0.258-0.678; P 0.001).In primary care, NOACs are frequently prescribed with unadjusted dosages, generally infratherapeutic. Attention should be paid to women and patients with chronic kidney disease.

We analyzed indirect costs related to loss of labor productivity (LLP) in informal caregivers (ICs) of people with dementia (PwD) and the associated caregiver burden and patients' clinical variables.Multicenter cohort study of PwD and their ICs (n = 287) focused on two groups: (1) home care and (2) institutional long-term care. The costs of LLP were assessed using the Resource Utilization Dementia instrument and a human capital approach.The cost for LLP was 378OV0556;/month or 4.536OV0556;/year. Greater disease severity increased the likelihood of reducing working hours and missing a working day. There was a significant association between partial absenteeism and burden in employed informal caregiver in both the home and institutional setting.Cognitive impairment contributes to the cost of LLP in IC especially in home-care. LLP has a negative impact on IC burden.

Objectives: To explore associations between carer burden and characteristics of (1) the informal carer, (2) the person with dementia, and (3) the care support network in 8 European countries.Design: Cross-sectional study.Setting: People with dementia judged at risk of admission to long-term care (LTC) facilities in 8 European countries (Estonia, Finland, France, Germany, Netherlands, Spain, Sweden, United Kingdom).Participants: A total of 1223 people with dementia supported by community services at home or receiving day care or respite care and their informal carers.Measurements: Variables regarding the informal carer included familial relationship and living situation. Variables relating to the person with dementia included cognitive functioning (S-MMSE), neuropsychiatric symptoms (NPI-Q), depressive symptoms (Cornell depression scale), comorbidity (Charlson Comorbidity Index), and physical functioning (Katz Activity of Daily Living [ADL] Index). The care support network was measured using hours of caregiving (ADLs, instrumental ADLs [IADLs], supervision), additional informal care support, and service receipt (home care, day care). Experience of carer burden was recorded using the Zarit Burden Interview. Logistic regression analysis was used to determine factors associated with high carer burden.Results: Carer burden was highest in Estonia (mean 39.7/88) and lowest in the Netherlands (mean 26.5/88). High burden was significantly associated with characteristics of the informal carer (family relationship, specifically wives or daughters), of the person with dementia (physical dependency in ADLs; neuropsychiatric symptoms, in particular night time behaviors and irritability), the care support network (hours of caregiving supervision; receipt of other informal care support) and country of residence.Conclusion: A range of factors are associated with burden in informal carers of people with dementia judged to be on the margins of LTC. Support for informal carers needs to take account of gender differences. The dual challenges of distressed behaviors and difficulties in ADLs by the person with dementia may be addressed by specific nonpharmacological interventions focusing on both elements. The potential protective effect of additional informal support to carers highlights the importance of peer support or better targeted home support services. The implementation of appropriate and tailored interventions to reduce burden by supporting informal carers may enable people with dementia to remain at home for longer. (C) 2017 AMDA - The Society for Post-Acute and Long-Term Care Medicine.

Background: The aim of this study is to identify the barriers and facilitators in dementia care with respect to information provision, communication, and collaboration from the perspectives of the person with dementia, family caregivers, and health care professionals over the course of the illness. Methods: A qualitative study using Focus-Group methodology was carried out in people with dementia, family caregivers, and health care providers. Results: The categories that emerged from the analysis were insufficient information provided, specific dementia care needs, and acceptance of long-term care institutionalization from the people with dementia and caregivers’ groups and insufficient communication between health care providers, differential information according to disease stage, and home care coordination from the health care providers’ groups. Conclusion: The family is a key element in successful care coordination during dementia care provision. New effective strategies including self-management and emergent roles, such as case managers, could bring great benefits to people with dementia, caregivers, and health care providers.

Background: Dementia is a progressive neurological disorder that causes a high degree of dependency. This dependency has been defined as an increased need for assistance due to deterioration in cog ...

Aim To describe the associations between positive and negative reactions of informal caregivers of people with dementia and health outcomes across eight European Countries. BackgroundCaring for someone with dementia may have implications for the caregiver's own health and for the care recipient. These consequences could be associated with caregivers' reactions to the process of care. DesignAssociation study based on cross-sectional data. MethodsParticipants were people with dementia and their informal caregivers living at home or in long-term care institutions. Data were collected between November 2010-April 2012 using the Caregiver Reaction Assessment (with dimensions of self-esteem, lack of family support, financial problems, disrupted schedule and health problems) and associations were sought with informal caregiver burden, quality of life and psychological well-being and with dementia sufferers' neuropsychiatric symptoms, comorbidity and dependency in activities of daily living using correlation coefficients. ResultsData from 2014 participants were used. Variability across countries was noted, as well as differences between care at home and in long-term care institutions. In general, self-esteem and lack of family support correlated with caregiver burden and psychological well-being. Associations were also found between disrupted schedule and caregiver burden, psychological well-being and quality of life. Health problems were clearly associated with caregiver burden, psychological well-being and quality of life. ConclusionStudy results support links between the reactions of informal caregivers of people with dementia and health outcomes. These may have implications in terms of how services are addressed.

AimTo investigate persons with dementia and their informal caregivers' views of inter-sectoral information, communication and collaboration throughout the trajectory of dementia care, in eight European countries.BackgroundLiving with dementia and being next of kin to a person with dementia means having to live through stages that have different characteristics, needs, challenges and requirements.DesignQualitative research. Focus groups were conducted in England, Estonia, Finland, France, Germany, The Netherlands, Spain and Sweden.MethodsPersons with dementia and their informal caregivers (N=137) participated in focus group interviews during 2011. Content analysis generated a tentative model of information, communication and collaboration for people with dementia and their caregivers, which was then tested.ResultsThe core finding was that information, communication and collaboration were to be focused on the persons with dementia and the informal caregivers. Entering into the trajectory of the disease and its consequences was addressed as an important point of departure. The relation to professional care required establishing a trusting relationship, tailor-made intervention and a single person or organization to contact. Professional knowledge and commitment, variation in service and care adapted to needs were important.ConclusionAs focus of care is on the person with dementia and their informal caregivers, a dyadic approach seems most suitable for dementia care. A trusting relationship and a specific person or organization to contact seem to be indicators of best practice, as does adaptation to the needs of the person with dementia and their informal caregiver.

espanolObjetivo: describir las caracteristicas de los pacientes con demencias y la calidad del cuidado (CDC) recibida tanto en aquellos sujetos que vivian en casa como en los que estaban institucionalizados, y evaluar las diferencias entre ambos entornos. Metodo: se realizo un estudio transversal analitico en el cual se incluyeron pacientes con demencia que vivian en casa o estaban institucionalizados. Se recogieron datos sociodemograficos, clinicos y relacionados con la demencia. La CDC se analizo mediante el cuestionario CLINT y se identificaron otras variables indicativas de la misma. Las variables recopiladas se compararon en funcion de los dos entornos de convivencia. Resultados: se incluyeron 287 pacientes con demencia. El 39,4% institucionalizados y el 60,6% vivia en el domicilio. Los sujetos presentaban una media de edad (desviacion tipica) de 83,2 (7,1) anos. El principal tipo de demencia fue el alzheimer, que representaba el 71%. Los pacientes institucionalizados presentaban peor estado cognitivo (12,2 frente a 16,1; p= 0,001) y funcional (1,1 frente a 3,1; p= 0,001) que los pacientes con demencia que vivian en el domicilio familiar. La CDC fue similar en ambos grupos, pero los sujetos institucionalizados presentaban mayor porcentaje de ulceras y caidas, mas medidas de contencion y mayor soporte del sistema sanitario, en general. Conclusiones: el cuidado de la demencia es complejo y la calidad del cuidado de estos pacientes sigue siendo baja tanto en el ambito de las medidas fisicas generales como las basadas en el soporte del sistema sanitario, tanto a enfermos como cuidadores informales. EnglishObjective: to describe the characteristics of patients with dementia and the quality of care (QoC) received by patients living at home and by those institutionalized, and to evaluate the differences between both settings. Methods: an analytical cross-sectional study was conducted, including patients with dementia living at home or institutionalized. Sociodemographical and clinical data were collected, as well as data associated with dementia. QoC was analyzed through the CLINT questionnaire, and other variables of reference were identified. There was a comparison of the variables collected, based on the two living settings. Results: the study included 287 patients with dementia: 39.4% were institutionalized and 60.6% lived at home. The subjects were 83.2-year-old (7.1) as mean age (standard deviation). The main type of dementia was Alzheimer, representing 71% of cases. Institutionalized patients presented worse cognitive (12.2 vs. 16.1; p= 0.001) and functional status (1.1 vs. 3.1; p= 0.001) than patients with dementia living in the family home. QoC was similar in both groups, but institutionalized subjects presented in general a higher proportion of ulcers and falls, more containment measures, and higher support by the healthcare system. Conclusions: care for dementia is complex, and the quality of care for these patients is still low, both in the setting of general physical measures and regarding the support by the healthcare system for nurses and casual caregivers.

AimTo explore inter-country variation of factors associated with institutionalization of people with dementia.BackgroundThere is an urgent need for evidence on whether factors associated with admission to institutional dementia care are applicable across healthcare systems, as increasing evidence suggests that these factors could be country-specific.DesignA prospective cohort study.MethodPrimary data were collected in eight European countries, at baseline and after 3months follow-up (November 2010-April 2012). The sample included 2014 dyads of people with dementia and their informal caregivers; 791 patients were recently institutionalized, 1223 patients lived at home and were at risk of institutionalization. Associations between care setting (institution vs. home) and factors shown to influence institutionalization (e.g. cognition, independence in activities of daily life, behaviour) were studied.ResultsConsiderable differences were found between the eight countries in characteristics of people with dementia who had been recently admitted to ILTC. However, caregiver burden appeared the most consistent factor associated with institutionalization in all analyses. Indications for the importance of independence in activities of daily life were found as well, although country differences may be more prominent for this factor.ConclusionEvidence was found for two common factors, crucial in the process of institutionalization across countries: caregiver burden and independency in activities of daily life. However, this study also suggests that admission to institutional dementia care is context-specific, as wide variation exists in factors associated with institutionalization across countries. Tailored best-practice strategies are needed to reflect variations in response to these needs.

AIMS: To explore the perceptions of informal caregivers and healthcare professionals regarding potential reasons for the institutionalization of older persons with dementia in eight European countries. BACKGROUND: Healthcare professionals may have an important role in facilitating informal caregivers' decision-making regarding institutionalization. Little is known about the perceptions of informal caregivers and healthcare professionals prior to institutionalization. DESIGN: Cross-sectional survey in eight European countries (November 2010-January 2012). METHODS: Healthcare professionals reported why they clinically judged persons with dementia at risk for institutionalization. Informal caregivers reported potential reasons from their perspectives. Answers were openly coded and categorized. Variation between informal caregivers and healthcare professionals was investigated (agreement on at least one potential reason per case/proportion of maximum attainable kappa). RESULTS: Judgements of healthcare professionals and informal caregivers on 1160 persons with dementia were included. A total of 22 categories emerged. Approximately 90% of informal caregivers reported potential reasons. In 41% of the cases, informal caregivers and healthcare professionals agreed on at least one reason. Discrepancy was high for potential reasons related to caregiver burden. For the most frequent categories (caregiver burden, caregiver unable to provide care, neuropsychiatric symptoms, overall deterioration, care dependency), 24-41% of the attainable kappa was achieved. Differences between countries emerged indicating more favourable agreement in Finland, Sweden and Estonia and lowest agreement in England and Spain. CONCLUSION:Agreement between healthcare professionals and informal caregivers on potential reasons for institutionalization was low-to-moderate. Healthcare professionals are challenged to develop a detailed understanding of the perspectives and perceived burden of informal caregivers.

Aims. To describe differences in caregiver burden and health-related quality of life of informal caregivers of people with dementia in eight European countries and assess changes after transition from home to institutional long-term care. Background. Country differences in the experience of burden and health-related quality of life are rarely described. Design. Prospective cohort study. Methods. Data on burden and health-related quality of life were collected at baseline (conducted between November 2010–April 2012) and follow-up (after 3 months) using face-to-face interviews. Two groups of informal caregivers included those: (1) of people with dementia recently admitted to institutional long-term care facilities; and those (2) of people with dementia receiving home care. Statistical analyses focused on descriptive comparisons between groups and countries. Results. Informal caregivers of about 2014 were interviewed. Informal caregivers of people with dementia at home experienced more burden compared with informal caregivers of recently institutionalised people with dementia. Almost no differences in health-related quality of life were found between groups. Large differences between countries on outcomes were found. Informal caregivers of people with dementia who made the transition to an institutional long-term care facility experienced a statistically significant decrease in burden and psychological distress at follow-up. Conclusion. Cross-country differences may be related to differences in health and social care systems. Taking this into account, informal caregiver interventions need to be tailored to (country specific) contexts and (individual) needs. Findings highlight the positive impact of admission to institutional long-term care on informal caregiver well-being.

Aim To investigate agreement between: (1) expected reasons and actual reasons for admission of people with dementia according to informal caregivers; (2) scores on measurement instruments prior to admission and the actual reasons for admission according to informal caregivers. BackgroundTimely admission of people with dementia is a crucial issue. Information is highly warranted on whether informal caregivers are capable of prior identification of causes of admission and, can thus be considered a reliable prospective source on causes of admission. DesignA cohort study among informal caregivers of people with dementia who made a transition to institutional long-term care. MethodsQualitative data on the expected and actual reasons for admission were collected via open-ended questions at baseline and follow-up. Furthermore, at baseline, data were collected using measurement instruments to measure pre-admission characteristics. Interviews took place between November 2010-April 2012. After categorizing the answers, the agreement between the expected and actual reasons was calculated. Furthermore, bivariate associations were calculated between the actual reasons for admission and scores on corresponding measurement instruments. Results/FindingsFor most informal caregivers, there was agreement between their statements on the expected reason and the actual reason for admission. A third of the caregivers showed no conformity. Bivariate associations showed that there is also agreement between the actual reasons for admission and scores on corresponding measurement instruments. ConclusionInformal caregivers can be considered reliable sources of information regarding what causes the admission of a person with dementia. Professional care should anticipate informal caregivers' statements and collaborate with them to strive for timely and appropriate admission.

OBJECTIVES: To explore the extent to which client characteristics, decision-maker attributes, and country influence judgments of institutional long-term care (ILTC) appropriateness for people with dementia.DESIGN, SETTING, AND PARTICIPANTS: A total of 161 experts in dementia care from 8 European countries reviewed a series of 14 vignettes representing people with dementia on the cusp of ILTC admission and indicated the most appropriate setting in which to support each case in a simple discrete choice exercise: own home, very sheltered housing, residential home, or nursing home. At least 16 experts participated in each country (Estonia, Finland, France, Germany, the Netherlands, Spain, Sweden, and the United Kingdom).MEASUREMENTS: Descriptive statistics were used to characterize the experts and their placement preferences. Logistic regression modeling was used to explore the extent to which the sociodemographic and clinical characteristics of people with dementia, and the profession, workplace, and country of decision-makers were associated with ILTC recommendation.RESULTS: Client characteristics, decision-maker attributes, and country all seemed to play a part in influencing professionals' perceptions of the appropriateness of ILTC for people with dementia. Expert decision-makers were more likely to recommend ILTC for individuals who required help with mobility or had multiple care needs, and appeared to give more weight to carers' than clients' wishes. Community-based social workers were less likely than other professional groups to favor ILTC placement. Experts in Finland, Germany, and the United Kingdom were less likely to recommend ILTC than experts in France, the Netherlands, and Estonia; experts in Sweden and Spain took an intermediate position.CONCLUSION: This study provides new understanding of the factors that shape professionals' perceptions of ILTC appropriateness and highlights the need to construct multifaceted models of institutionalization when planning services for people with dementia. It also has several important clinical implications (including flagging interventions that could decrease the need for ILTC), and provides a basis for enhancing professionals' decision-making capabilities (including the greater involvement of clients themselves).

Background Medically unexplained symptoms are an important mental health problem in primary care and generate a high cost in health services. Cognitive behavioral therapy and psychodynamic therapy have proven effective in these patients. However, there are few studies on the effectiveness of psychosocial interventions by primary health care. The project aims to determine whether a cognitive-behavioral group intervention in patients with medically unexplained symptoms, is more effective than routine clinical practice to improve the quality of life measured by the SF-12 questionary at 12 month. Methods/design This study involves a community based cluster randomized trial in primary healthcare centres in Madrid (Spain). The number of patients required is 242 (121 in each arm), all between 18 and 65 of age with medically unexplained symptoms that had seeked medical attention in primary care at least 10 times during the previous year. The main outcome variable is the quality of life measured by the SF-12 questionnaire on Mental Healthcare. Secondary outcome variables include number of consultations, number of drug (prescriptions) and number of days of sick leave together with other prognosis and descriptive variables. Main effectiveness will be analyzed by comparing the percentage of patients that improve at least 4 points on the SF-12 questionnaire between intervention and control groups at 12 months. All statistical tests will be performed with intention to treat. Logistic regression with random effects will be used to adjust for prognostic factors. Confounding factors or factors that might alter the effect recorded will be taken into account in this analysis. Discussion This study aims to provide more insight to address medically unexplained symptoms, highly prevalent in primary care, from a quantitative methodology. It involves intervention group conducted by previously trained nursing staff to diminish the progression to the chronicity of the symptoms, improve quality of life, and reduce frequency of medical consultations. Trial registration The trial was registered with ClinicalTrials.gov, number NCT01484223 [http://ClinicalTrials.gov].