Defining practice variation and exploring influencing factors on needs assessment in home care nursing: A Delphi study.

AIM: To describe a Delphi study regarding practice variation in needs assessment by Dutch home care nurses, to define practice variation in home care nursing and explore which factors may have a role in this needs assessment. DESIGN: A Delphi study was conducted with the participation of home care representatives. METHOD: A Delphi questionnaire was developed, preceded by literature research and an expert meeting. The Delphi study took place between December 2020 and February 2021. The goal was to achieve a consensus level of at least 70%. RESULTS: After three rounds, 32 experts reached a consensus about definitions regarding variation in needs assessment, warranted and unwarranted variation. In total, 59 factors were determined related to (1) the client and health, (2) the clients' context, (3) nurses and (4) the nurses' context. Thirty-four factors scored warranted of influence and 18 (of 34) were client related. Most of the factors that scored unwarranted influencing needs assessment (17 of 26) were related to the home care nurses' context. CONCLUSION: Having a consensus about the definition of practice variation in needs assessment and possible influencing factors support the professionals to discuss and improve the unity and quality of their decision-making process in home care. This may contribute to more righteous care for clients in need of home care. IMPACT: Since 2015, home care nurses in the Netherlands are responsible for determining the amount, type and duration of care for clients in need of home care. This so-called needs assessment legitimizes the payment by health insurers. Signals of practice variation in needs assessment are heard in home care field. Although practice variation may be justified, it can lead to over or underuse of care, which may affect clients' outcomes. If we can identify influencing factors and find patterns that contribute to practice variation, we might gain a better understanding of the process and improve home care. PATIENT OR PUBLIC CONTRIBUTION: In this study, there was no patient or public involvement. Client representatives were included in this research as experts in the home care field, and they participated in three rounds of the Delphi study. They contributed by sharing their expert opinion on the definitions presented and the factors possibly influencing needs assessment.

Measures to improve patient needs assessments and reduce practice variation in Dutch home care organizations.

AIM: Worldwide, long-term care tends to shift from institutional care towards home care. In order to deliver high-quality and adequate care, the type, amount and cost of care is determined by a patient needs assessment. However, there are indications that this patient needs assessment varies between comparable patients. In the Netherlands, some home care organizations aim to improve patient needs assessments by implementing improvement measures to reduce this practice variation. The goal of this study was to explore the type and perceived impact of those implemented improvement measures. DESIGN: A cross-sectional explorative survey study was conducted among Dutch home care organizations between January and April 2021. METHODS: An online questionnaire with 26 items was developed by the research team, which was distributed through Dutch nationwide home care sector organizations, the Dutch nurses' association (V&VN) and the Dutch society for home care nursing (NWG). RESULTS: The survey was completed by 184 respondents, including home care nurses, managers and staff who are responsible for training, policy and quality of care. Intervision and peer review for home care nurses were the most common reported improvement measures that were implemented in home care organizations. The experiences of those improvement measures have been perceived as creating greater uniformity in the patient needs assessment, making home care nurses feel more supported and secure performing their patient needs assessment and that the provided care is more in line with patients' demand. Our findings give insights into type and perceived impact of improvement measures that Dutch home care organizations implemented. Further research is needed to find out whether improvement measures actually improve patient needs assessments and reduce practice variation.

Effect, economic and process-evaluation of a generic function focused care program for long-term care; study protocol of a multicenter cluster-randomized trial.

BACKGROUND: Nurses are in a key position to stimulate older people to maximize their functional activity and independence. However, nurses still often work in a task-oriented manner and tend to take over tasks unnecessarily. It is evident to support nurses to focus on the capabilities of older people and provide care assistance only when required. Function-Focused Care (FFC) is a holistic care-philosophy aiming to support nurses to deliver care in which functioning and independence of older people is optimized. Dutch and internationally developed FFC-based interventions often lack effectiveness in changing nurses' and client's behavior. Process-evaluations have yielded lessons and implications resulting in the development of an advanced generic FFC-program: the 'SELF-program'. The SELF-program aims to improve activity stimulation behavior of nurses in long-term care services, and with that optimize levels of self-reliance in activities of daily living (ADL) in geriatric clients. The innovative character of the SELF-program lies for example in the application of extended behavior change theory, its interactive nature, and tailoring its components to setting-specific elements and needs of its participants. This paper describes the outline, content and theoretical background of the SELF-program. Subsequently, this paper describes a protocol for the assessment of the program's effect, economic and process-evaluation in a two-arm (SELF-program vs care as usual) multicenter cluster-randomized trial (CRT). METHOD: The proposed CRT has three objectives, including getting insight into the program's: (1) effectiveness regarding activity stimulation behavior of nurses and self-reliance in ADL of geriatric clients, and (2) cost-effectiveness from a societal perspective including assessments of quality of life and health-care use. Measurements will take place prior to program implementation (baseline), directly after (T1), and in long-term (T2). Parallel to the CRT, a process evaluation will be conducted to provide insight into the program's: (3) feasibility regarding implementation, mechanisms of impact and contextual factors. DISCUSSION: The SELF-program was developed following the Medical Research Council framework, which addresses the systematic development, feasibility testing, evaluation and implementation of complex interventions. The program has been subjected to a feasibility study before and results of studies described in this protocol are expected to be available from end 2022 onwards. TRIAL-REGISTRATION: The study is registered in the Dutch Trial Register ( NL9189 ), as of December 22 2020.

The Pain Assessment in Impaired Cognition scale (PAIC15): A multidisciplinary and international approach to develop and test a meta-tool for pain assessment in impaired cognition, especially dementia.

BACKGROUND: Over the last decades, a considerable number of observational scales have been developed to assess pain in persons with dementia. The time seems ripe now to build on the knowledge and expertize implemented in these scales to form an improved, "best-of" meta-tool. The EU-COST initiative "Pain in impaired cognition, especially dementia" aimed to do this by selecting items out of existing observational scales and critically re-assessing their suitability to detect pain in dementia. This paper reports on the final phase of this collaborative task. METHODS: Items from existing observational pain scales were tested for "frequency of occurrence (item difficulty)," "reliability" and "validity." This psychometric testing was carried out in eight countries, in different healthcare settings, and included clinical as well as experimental pain conditions. RESULTS: Across all studies, 587 persons with dementia, 27 individuals with intellectual disability, 12 Huntington's disease patients and 59 cognitively healthy controls were observed during rest and movement situations or while receiving experimental pressure pain, respectively. The psychometric outcomes for each item across the different studies were evaluated within an international and multidisciplinary team of experts and led a final selection of 15 items (5x facial expressions, 5x body movements, 5x vocalizations). CONCLUSIONS: The final list of 15 observational items have demonstrated psychometric quality and clinical usefulness both in their former scales and in the present international evaluation; accordingly, they qualified twice to form a new internationally agreed-on meta-tool for Pain Assessment in Impaired Cognition, the PAIC-15 scale. SIGNIFICANCE: Using a meta-tool approach by building on previous observational pain assessment scales and putting the items of these scales through rigorous empirical testing (using experimental as well as clinical pain studies in several European countries), we were able to identify the best items for pain assessment in individuals with impaired cognition. These selected items form the novel PAIC15 scale (pain assessment in impaired cognition, 15 items).

What do relatives value most in end-of-life care for people with dementia?

BACKGROUND: End-of-life care for older people with dementia is often sub-optimal. Understanding the experiences of the relatives involved in the care of the person with dementia may help to improve care practice. AIMS: To investigate relatives' experiences with end-of-life care for people with dementia, comparing the nursing home and home setting. METHODS: In-depth interviews were conducted with 32 individuals who were bereaved of someone with dementia. Thematic analysis was performed to identify main themes from the data. FINDINGS: Experiences translated into four themes: acknowledging human dignity; being recognised as an important caregiver; (not) talking about death and dying and making decisions together. A lack of person-centered care was mainly evident in nursing homes. Relatives took on a more prominent role in the care of the older person with dementia when the relative was cared for in a home setting and this involvement in the care of the older person was something that the relatives valued. Surrogate decision-making induced similar challenges in both settings. CONCLUSION: It is important that healthcare professionals inform and support relatives to help them make decision about end-of-life care and preferences. Nursing homes should learn to offer the same standard of person-centred care as a home care setting, and ensure that relatives are still involved in the care of the person with dementia.

Costs of Care of Agitation Associated With Dementia in 8 European Countries: Results From the RightTimePlaceCare Study.

OBJECTIVE: To estimate the additional societal costs for people living with dementia (PwD) with agitation in home care (HC) and institutional long-term care (ILTC) settings in 8 European countries. DESIGN: Cross-sectional data from the RightTimePlaceCare cohort. SETTING: HC and ILTC settings from 8 European countries (Estonia, Finland, France, Germany, Netherlands, Spain, Sweden, and England). PARTICIPANTS: A total of 1997 PwD (1217 in HC group and 780 lived in an ILTC) and their caregivers. MAIN OUTCOME MEASURES: Medical care, community care, and informal care were recorded using the Resource Utilization in Dementia (RUD) questionnaire. Agitation was assessed based on the agitation symptoms cluster defined by the presence of agitation and/or irritability and/or disinhibition and/or aberrant motor behavior items of the Neuropsychiatric Inventory Questionnaire (NPI-Q). RESULTS: Total monthly mean cost differences due to agitation were 445€ in the HC setting and 561€ in the ILTC setting (P = .01 and .02, respectively). Informal care costs were the main driver in the HC group (73% of total costs) and institutional care costs were the main driver in the ILTC group (53% of total costs). After adjustments, the log link generalized linear mixed model showed an association between agitation symptoms and an increase of informal care costs by 17% per month in HC setting (P < .05). CONCLUSION: This study found that agitation symptoms have a substantial impact on informal care costs in the community care setting. Future research is needed to evaluate which strategies may be efficient by improving the cost-effectiveness ratio and reducing the burden associated with informal care in the management of agitation in PwD.

The Impact of Organizational Innovations in Nursing Homes on Staff Perceptions: A Secondary Data Analysis.

PURPOSE: The shift in nursing home care for patients with dementia from traditional task-driven environments towards patient-centered small-scale environments has implications for nursing practice. Information about its implications for nursing staff is lacking, and only a few studies have addressed staff perceptions. We sought to explore staff perceptions of required skills and to determine differences in job satisfaction, motivation, and job characteristics of staff working in both care settings. DESIGN: A secondary data analysis was conducted. The data source used was drawn from a larger study testing the effects of small-scale living (Verbeek et al., 2009). METHODS: Nursing staff working on a permanent basis and who were directly involved in care were eligible to participate in the study. Data on job satisfaction, motivation, and job characteristics of nursing staff working in typical small-scale and traditional care environments were derived using a questionnaire. Data were analyzed using descriptive statistics. Differences between nursing staff job satisfaction, motivation, and job characteristics were tested using multilinear regression analysis. FINDINGS: In total, 138 staff members were included (81 staff members working in traditional nursing home wards and 57 staff members working in small-scale nursing home wards). The findings showed that in typical small-scale nursing homes, job satisfaction and job motivation were significantly higher compared to those in typical traditional nursing homes. Job autonomy and social support were also significantly higher, while job demands were significantly lower in these small-scale nursing homes. Social support was found to be the most significant predictor of job motivation and job satisfaction in both types of typical nursing homes. Nursing staff working in traditional care environments more often expressed the intention to switch to small-scale environments. CONCLUSIONS: Based on the findings of this study, it can be concluded that nursing homes environments differ substantially in experienced job satisfaction and job motivation. CLINICAL RELEVANCE: To enable a balanced work environment for nursing staff, a clear understanding of the relation between living environments and experienced job satisfaction among nursing staff is required. Since social support seems to be one of the key contributors to a supportive beneficial work climate, managers should focus on enabling this in daily nursing home care.

Attitudinal & Knowledge Barriers Towards Effective Pain Assessment & Management in Dementia: A Narrative Synthesis.

Under-assessment and inadequate treatment of pain is a common problem for older adults, particularly those with dementia. This may be in part attributed to knowledge deficits and negative attitudes among healthcare staff and informal caregivers towards pain, its assessment and its management in dementia. Knowledge and attitudes have a significant predictive relationship with behavior, potentially impacting pain assessment and management practices. Despite this there remains a paucity of research in the area and a lack of clarity about existing knowledge levels and attitudes among dementia caregivers. Therefore, the aims of this review were to: identify what knowledge deficits and attitudinal barriers exist amongst dementia caregivers; and identify the scales available to measure these. A search was carried out in the following electronic databases: Academic Search Premier; CINAHL; Education Research Complete; Humanities International Journals; Psychology and Behavioral Sciences Collection; PsychINFO; PsychArticles; Teacher Reference Center; and MEDLINE. A total of 13 articles met the inclusion criteria. A number of knowledge deficits and negative attitudes were identified, particularly in the use self-reports and pain assessment tools in dementia, and the safety of opioids. Understanding and positive attitudes were demonstrated in some areas, such as non-narcotic pain medications and identifying behavioral pain indicators. Of the 4 scales identified, positive results were found for internal consistency and content validity, however further refinement and testing is necessary. It was concluded attitudinal and knowledge barriers exist which should be addressed given their influence over practice behavior, however, there is a willingness and knowledge base from which progress can build.

Psychological well-being over time among informal caregivers caring for persons with dementia living at home.

OBJECTIVES: To investigate informal caregivers' psychological well-being and predicted increase in psychological well-being, when caring for persons with dementia (PwDs) living at home, related to caregiver, PwD and formal care (FC) factors. METHOD: A cohort study at baseline and 3 months' follow-up in eight European countries. Caregivers included (n = 1223) were caring for PwDs aged ≥ 65 years at home. Data on caregivers, PwDs and FC were collected using standardized instruments. Regression analysis of factors associated with caregiver psychological well-being at baseline and 3 months later was performed. RESULTS: Factors associated with caregiver psychological well-being at baseline were positive experience of caregiving, low caregiver burden, high quality of life (QoL) for caregivers, male gender of PwD, high QoL of PwD, few neuropsychiatric symptoms and depressive symptoms for the PwD. At follow-up, caregivers with increased psychological well-being experienced of quality of care (QoC) higher and were more often using dementia specific service. Predicting factors for caregivers' increased psychological well-being were less caregiver burden, positive experience of caregiving, less supervision of the PwD and higher caregiver QoL, if PwD were male, had higher QoL and less neuropsychiatric symptoms. Furthermore, higher QoC predicted increased caregivers' psychological well-being. CONCLUSION: Informal caregiving for PwDs living at home is a complex task. Our study shows that caregivers' psychological well-being was associated with, among other things, less caregiver burden and higher QoL. Professionals should be aware of PwD neuropsychiatric symptoms that might affect caregivers' psychological well-being, and provide proper care and treatment for caregivers and PwDs.

The association between aspects of daily life and quality of life of people with dementia living in long-term care facilities: a momentary assessment study.

BACKGROUND: To improve the quality of life (QoL) of people with dementia (PwD) living in long-term care facilities, insight into the association between QoL and how people spend their daily lives is urgently needed. This study investigated which aspects of daily life are related to QoL in dementia. METHODS: An observational study was conducted. Daily life was assessed with the tablet-based Maastricht Electronic Daily Life Observation-tool (MEDLO-tool). Aspects included activity, engagement in the activity, social interaction, physical effort, mood, and agitation. QoL was assessed by formal nursing caregivers using the Quality of Life-Alzheimer's Disease scale (QoL-AD). A total of 9,660 momentary assessments were conducted. RESULTS: The mean age of the 115 participants was 84 years and most (75%) were women. Bivariate analyses showed that residents with a higher QoL carried out less passive/purposeless activities (25% vs. 38%), were more engaged in active, expressive, and social activities, (40% vs. 27%), had more social interaction (34% vs. 22%), and had better mood scores (scale 1-7, 5.0 vs. 4.8), compared with residents with a lower QoL (all p-values < 0.001). Multivariate analyses showed that having more social interaction and a positive mood are related to a higher QoL. CONCLUSIONS: The results underline the importance of social interaction and a positive mood for a higher QoL. Future research should investigate the importance of engagement in activities in more detail.

The use of facial expressions for pain assessment purposes in dementia: a narrative review.

Facial expressions convey reliable nonverbal signals about pain and thus are very useful for assessing pain in patients with limited communicative ability, such as patients with dementia. In this review, we present an overview of the available pain observation tools and how they make use of facial expressions. Utility and reliability of facial expressions to measure pain in dementia are discussed, together with the effect of dementia severity on these facial expressions. Next, we present how behavioral alterations may overlap with facial expressions of pain, and may even influence the extent to which pain is facially expressed. The main focus is on disinhibition, apathy and emotional changes. Finally, an overview of theoretical considerations and practical implications is presented for assessing pain using facial expressions in clinical settings.

Informal dementia care: Consequences for caregivers' health and health care use in 8 European countries.

BACKGROUND: Informal (dementia) care has economic consequences throughout the health care system. Whilst the health and wellbeing of the care recipient might improve, the health of the caregiver might also change, typically for the worse. Therefore, this analysis aims to examine the association between caregiving intensity and caregivers' health and health care utilization. DATA AND METHODS: The empirical analysis is based on cross-sectional survey data generated by the European Project "RightTimePlaceCare" (RTPC). RTPC was a prospective cohort study conducted in eight European countries (Estonia, Finland, France, Germany, Netherlands, Sweden, Spain and the United Kingdom). The health status of 1029 informal caregivers was assessed by measures of psychological wellbeing (GHQ-12) and self-rated overall health (EQ-VAS). Health care utilization was measured by (i) the self-stated proportion of health care use influenced by caregiving and (ii) the probability of at least one visit to a general practitioner within in the last 30 days. The association between caregiving intensity and caregivers' health and health care utilization was assessed by descriptive analysis and multivariate OLS- and probit-models. RESULTS: A higher amount of informal care was significantly related to negative health outcomes for informal caregivers. On average, one additional hour of informal caregiving per day was associated with a decrease of psychological wellbeing and self-rated overall health by 0.16 and 0.42 index points respectively. Furthermore, one more hour of informal caregiving corresponded with increased self-stated proportion of health care use by 0.56 percentage points. However, the claim of increased health care demand due to caregiving as measured by GP visits was only partly confirmed. CONCLUSION: When evaluating the full economic effect of informal care, the impact of providing care on caregivers' health and health care utilization has to be taken into account.

Self-management support intervention to control cancer pain in the outpatient setting: a randomized controlled trial study protocol.

BACKGROUND: Pain is a prevalent and distressing symptom in patients with cancer, having an enormous impact on functioning and quality of life. Fragmentation of care, inadequate pain communication, and reluctance towards pain medication contribute to difficulties in optimizing outcomes. Integration of patient self-management and professional care by means of healthcare technology provides new opportunities in the outpatient setting. METHODS/DESIGN: This study protocol outlines a two-armed multicenter randomized controlled trial that compares a technology based multicomponent self-management support intervention with care as usual and includes an effect, economic and process evaluation. Patients will be recruited consecutively via the outpatient oncology clinics and inpatient oncology wards of one academic hospital and one regional hospital in the south of the Netherlands. Irrespective of the stage of disease, patients are eligible when they are diagnosed with cancer and have uncontrolled moderate to severe cancer (treatment) related pain defined as NRS≥4 for more than two weeks. Randomization (1:1) will assign patients to either the intervention or control group; patients in the intervention group receive self-management support and patients in the control group receive care as usual. The intervention will be delivered by registered nurses specialized in pain and palliative care. Important components include monitoring of pain, adverse effects and medication as well as graphical feedback, education, and nurse support. Effect measurements for both groups will be carried out with questionnaires at baseline (T0), after 4 weeks (T1) and after 12 weeks (T2). Pain intensity and quality of life are the primary outcomes. Secondary outcomes include self-efficacy, knowledge, anxiety, depression and pain medication use. The final questionnaire contains also questions for the economic evaluation that includes both cost-effectiveness and cost-utility analysis. Data for the process evaluation will be gathered continuously over the study period and focus on recruitment, reach, dose delivered and dose received. DISCUSSION: The proposed study will provide insight into the effectiveness of the self-management support intervention delivered by nurses to outpatients with uncontrolled cancer pain. Study findings will be used to empower patients and health professionals to improve cancer pain control. TRIAL REGISTRATION: NCT02333968 December 29, 2014.

Costs of care for people with dementia just before and after nursing home placement: primary data from eight European countries.

BACKGROUND: Dementia is the most common cause of functional decline among elderly people and is associated with high costs of national healthcare in European countries. With increasing functional and cognitive decline, it is likely that many people suffering from dementia will receive institutional care in their lifetime. To delay entry to institutional care, many European countries invest in home and community based care services. OBJECTIVES: This study aimed to compare costs for people with dementia (PwD) at risk for institutionalization receiving professional home care (HC) with cost for PwD recently admitted to institutional long-term nursing care (ILTC) in eight European countries. Special emphasis was placed on differences in cost patterns across settings and countries, on the main predictors of costs and on a comprehensive assessment of costs from a societal perspective. METHODS: Interviews using structured questionnaires were conducted with 2,014 people with dementia and their primary informal caregivers living at home or in an ILTC facility. Costs of care were assessed with the resource utilization in dementia instrument. Dementia severity was measured with the standardized mini mental state examination. ADL dependence was assessed using the Katz index, neuropsychiatric symptoms using the neuropsychiatric inventory (NPI) and comorbidities using the Charlson. Descriptive analysis and multivariate regression models were used to estimate mean costs in both settings. A log link generalized linear model assuming gamma distributed costs was applied to identify the most important cost drivers of dementia care. RESULTS: In all countries costs for PwD in the HC setting were significantly lower in comparison to ILTC costs. On average ILTC costs amounted to 4,491 Euro per month and were 1.8 fold higher than HC costs (2,491 Euro). The relation of costs between settings ranged from 2.4 (Sweden) to 1.4 (UK). Costs in the ILTC setting were dominated by nursing home costs (on average 94%). In the HC setting, informal care giving was the most important cost contributor (on average 52%). In all countries costs in the HC setting increased strongly with disease severity. The most important predictor of cost was ADL independence in all countries, except Spain and France where NPI severity was the most important cost driver. A standard deviation increase in ADL independence translated on average into a cost decrease of about 22%. CONCLUSION: Transition into ILTC seems to increase total costs of dementia care from a societal perspective. The prevention of long-term care placement might be cost reducing for European health systems. However, this conclusion depends on the country, on the valuation method for informal caregiving and on the degree of impairment.

A comparison between behavioral and verbal report pain assessment tools for use with residents in long term care.

The purpose of this study was twofold: (1) to evaluate four pain assessment tools for use with long-term care (LTC) residents who were both able and not able to verbally report their pain; and (2) to assess whether pain behaviors displayed by LTC residents vary as a function of ability to self-report pain. We examined the differences between these two groups of residents in terms of specific pain behaviors assessed through the Pain Assessment Checklist for Seniors with Limited Ability to Communicate (PACSLAC) and Pain Assessment in the Communicatively Impaired (PACI). We also examined the interrater reliability, and concurrent and construct validity of these two behavioral observation tools and the concurrent and construct validity of the two verbal report tools. Data were collected from a convenience sample of 338 residents from six LTC homes. The interrater reliabilities for the two behavioral observation tools were good, and concurrent validity was supported for all four pain assessment tools. Pain behaviors, as assessed by the PACSLAC and PACI, varied as a function of resident ability to verbally report pain. Residents with inability to self-report pain are more nonverbally responsive, although certain behaviors (such as guarding and touching the affected area) are seen more frequently in those capable of self-report. Our data also provide psychometric support for the assessment methods used in this study.

Systematic pain assessment using an observational scale in nursing home residents with dementia: exploring feasibility and applied interventions.

AIMS AND OBJECTIVES: To investigate the feasibility of regular pain assessment using an observational scale in nursing home residents with dementia and; determine interventions applied after diagnosing possible pain. BACKGROUND: Pain occurs regularly among nursing home residents with dementia and is frequently undertreated. Over the last decade a variety of observational scales have been developed to assess pain in elderly people with dementia. One of these observational scales is pain assessment using an observational scale. There are indications that the regular use of pain assessments scales can contribute to an adequate diagnosis of pain and therefore would improve pain treatment. DESIGN: In this exploratory descriptive observational study regular pain assessment using an observational scale as an intervention was evaluated. METHODS: Data were collected during a 6-week period (August-September 2009) where pain was measured twice a week among 22 residents of a psychogeriatric nursing home ward, using the pain assessment using an observational scale scale. Interventions undertaken as a result of the pain score were recorded on a datasheet. After the third and sixth week the implementation of pain assessment was evaluated with staff members using interviews. RESULTS: In total, 264 pain assessments were conducted using the pain assessment using an observational scale. Of all scheduled standardized assessments, 90% were completed. Sixty out of 264 assessment resulted in a pain score. The completed datasheets (n = 39), including information on the selected intervention and the reason for selecting a specific intervention, showed that a pain score (n = 17) did not often result in any intervention. The majority of interventions undertaken consisted of a non-pharmacological approach (n = 19). CONCLUSION: This study demonstrates that although there was a high compliance rate, pain relieving interventions were not frequently applied. Interventions undertaken after pain assessment were mainly non-pharmacological. RELEVANCE TO CLINICAL PRACTICE: Providing nursing staff with adequate pain assessment tools alone is not sufficient to change the pain management practices.

An item response theory-based assessment of the pain assessment checklist for Seniors with Limited Ability to Communicate (PACSLAC).

UNLABELLED: Pain is often undetected in older people with dementia partly due to a deterioration of cognitive functioning. Observational scales enable the measurement of pain by registering physiological changes, facial expressions, or behaviors. Previous research showed that the Pain Assessment Checklist for Seniors with Limited Ability to Communicate (PACSLAC) is especially useful to measure pain in older people with dementia. PACSLAC was recently translated into Dutch and refined, thus forming PACSLAC-D. The current study uses a different approach to refining PACSLAC by (1) selecting items on the basis of ratings of nursing personnel and (2) applying confirmatory robust maximum likelihood factor analysis and (3) item response theory to investigate the psychometric properties of the selected items. Of the items that nursing personnel frequently registered, 18 valid and reliable items remained. Fourteen of these 18 items were also selected for PACSLAC-D, which confirms that these items are valid and reliable indicators of pain in older people with dementia. Confirmatory factor analysis showed that a 3-factor model is most adequate to describe the data. Differential item functioning analyses indicated that 2 items were biased. Ultimately, a refined version of PACSLAC was created that nursing personnel with different educational backgrounds might use to assess pain in older people with varying degrees of dementia. PERSPECTIVE: This article describes the selection of items of PACSLAC on the basis of ratings of nursing personnel. By comparing this item selection with the items selected for PACSLAC-D, one can confirm that certain items are sound indicators of pain, whereas others need some attention (eg, through the training of raters).

The psychometric quality and clinical usefulness of three pain assessment tools for elderly people with dementia.

In view of the need for valid, reliable, and clinically useful scales to assess pain in elderly people with dementia, this study evaluated the psychometric properties of translated versions of the PAINAD, PACSLAC, and DOLOPLUS-2 scales. In an observational study design, two raters simultaneously assessed the nursing home residents (n=128) for pain during influenza vaccination and care situations. The PACSLAC was valued as the most useful scale by nurses. Cronbach's alpha was high (>.80) for the total scale at T2 and T3 and adequate for the 'Facial expression' and 'Social/personality/mood' subscales. IC scores for the 'Activity/body movement' and 'Physiological indicators/eating/sleeping changes/vocal behaviors' subscales were low. It demonstrated good validity and reliability, although the scale should be further refined. This refinement should increase homogeneity. The PAINAD showed good psychometric qualities in terms of reliability, validity, and homogeneity (alpha ranged .69-.74 at T2 and T3) (except for the 'Breathing' item). The PAINAD scale had lower scores for clinical usefulness in this sample. The Dutch version of the DOLOPLUS-2 was considered more difficult to use but showed acceptable psychometric qualities in terms of the issues assessed, except for the 'psychosocial reactions' subscale. IC of the DOLOPLUS were adequate for the total scale (alpha ranged .74-.75) and almost all subscales (alpha ranged .58-.80). Findings of this study provide evidence of validity and reliability of the three pain assessment scales. Now that a pain scale is available, future studies also need to focus on its implementation in nursing practice.

Pain in elderly people with severe dementia: a systematic review of behavioural pain assessment tools.

BACKGROUND: Pain is a common and major problem among nursing home residents. The prevalence of pain in elderly nursing home people is 40-80%, showing that they are at great risk of experiencing pain. Since assessment of pain is an important step towards the treatment of pain, there is a need for manageable, valid and reliable tools to assess pain in elderly people with dementia. METHODS: This systematic review identifies pain assessment scales for elderly people with severe dementia and evaluates the psychometric properties and clinical utility of these instruments. Relevant publications in English, German, French or Dutch, from 1988 to 2005, were identified by means of an extensive search strategy in Medline, Psychinfo and CINAHL, supplemented by screening citations and references. Quality judgement criteria were formulated and used to evaluate the psychometric aspects of the scales. RESULTS: Twenty-nine publications reporting on behavioural pain assessment instruments were selected for this review. Twelve observational pain assessment scales (DOLOPLUS2; ECPA; ECS; Observational Pain Behavior Tool; CNPI; PACSLAC; PAINAD; PADE; RaPID; Abbey Pain Scale; NOPPAIN; Pain assessment scale for use with cognitively impaired adults) were identified. Findings indicate that most observational scales are under development and show moderate psychometric qualities. CONCLUSION: Based on the psychometric qualities and criteria regarding sensitivity and clinical utility, we conclude that PACSLAC and DOLOPLUS2 are the most appropriate scales currently available. Further research should focus on improving these scales by further testing their validity, reliability and clinical utility.

Pain assessment in intellectually disabled people: non-verbal indicators.

BACKGROUND: Although important progress has been made during the past decade, research on pain in people with intellectual disabilities is still scarce. Pain assessment in people with intellectual disabilities is a frequent and difficult problem, especially for nurses working with people with intellectual disabilities on a daily basis. Gathering more information about pain in people with intellectual disabilities is of major importance and relevance for nursing, and adds to the developing body of knowledge. OBJECTIVE: To investigate the nature and relative importance of non-verbal indicators used by nurses to assess pain in people with a severe or profound intellectual disability. METHODS: A questionnaire consisting of 158 indicators of pain was used. A total of 135 nurses from nine institutions specializing in the care of people with intellectual disability were asked to rate each indicator on a scale of 1-10 to show which non-verbal expressions they considered important in diagnosing pain. RESULTS: A total of 109 nurses responded. All 158 indicators were mentioned as being important to indicate pain. All except four had a range of 9. Seven (moaning during manipulation, crying during manipulation, painful facial expression during manipulation, swelling, screaming during manipulation, not using (affected) body part, and moving the body in a specific way of behaving) were reported as 'very important' by more than 50% of nurses. The lowest score (median 5.5; minimum 1, maximum 10) was given to the indicator 'waving arm movements'. The pain of people with severe intellectual disability appeared to be assessed differently from that of people with profound intellectual disability. Indicators belonging to the 'physiological' category scored relatively higher in the group of nurses specializing in profound disability. In contrast, indicators belonging to the 'social-emotional' category were scored relatively higher by nurses specializing in severe disability. CONCLUSION: Nurses used a wide range of indicators to assess pain in people with intellectual disability. Functional abilities and level of disability seem to influence the indicators used.