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The detection and treatment of pain is hampered by cognitive disorders. In this review we discuss the epidemiology of pain in cognitive disorders, and elaborate further on the current state of the art on pain in these populations. We will specifically highlight current gaps and recommendations for the future for the following knowledge domains: 1) Biology and neuropathology,  2) Assessment and evaluation, 3) Treatment and management , and 4) Contextual factors such as the organization and education.  We identify the following knowledge gaps: 1) (Biology): Do pain experience and pain expressions change in different types of cognitive disorders, and how? 2) (Assessment): How to recognize, evaluate and assess pain, in case the self-report of pain is no longer reliable? 3) (Treatment): Which treatment possibilities are effective? How can we organize this in an interdisciplinary way? And how to monitor this? How can we ensure proper implementation of pain assessment and treatment in clinical practice? Specifically with regard to non-pharmacological treatment, how can we communicate observations from different disciplines, family members and clinicians to improve the detection of pain as well as treatment monitoring/evaluation? 4) (Contextual): How can we increase knowledge and skills on pain in cognitive impairment within educational training?

Objective: To systematically review the literature related to the effectiveness of parents' active involvement during painful interventions for their preterm infants., Data Sources: We performed a systematic search of PubMed, EMBASE/Ovid, CINAHL, Livivio, and PsycInfo using the keywords "preterm infants," "pain," and "parents.", Study Selection: Articles were eligible for inclusion if they were published between 2000 and 2021 and reported randomized controlled trials (RCTs) in which preterm infants underwent painful interventions, and parents were present and actively involved in pain-reducing measures., Data Extraction: We used the Consolidated Standards of Reporting Trials (CONSORT) checklist for RCTs for data extraction. We assessed methodologic quality using critical appraisal for RCTs according to the Joanna Briggs Institute., Data Synthesis: In total, 22 articles met the inclusion criteria. These articles reported 19 studies focused on kangaroo/skin-to-skin care, one focused on breastfeeding, and two focused on facilitated tucking. The methods used to evaluate pain in the infant varied substantially. Overall, kangaroo/skin-to-skin care and facilitated tucking resulted in clinically and statistically significant decreases in pain. For breastfeeding, effectiveness was linked to a more mature sucking pattern of the preterm infant., Conclusion: The current evidence suggests that involving parents in pain-reducing measures during painful interventions for their preterm infants is beneficial. However, more research is needed for the different methods of involving parents in pain-reducing measures., (Copyright © 2021 AWHONN, the Association of Women’s Health, Obstetric and Neonatal Nurses. Published by Elsevier Inc. All rights reserved.)

Recognition of pain in older persons with dementia is a considerable challenge to quality pain care for this vulnerable population. Without recognition, pain cannot be thoroughly evaluated and effectively treated. Observing for pain-related behaviors is the most researched means of identifying the presence or likelihood of pain in persons with moderate to severe dementia, or those who are unable to self-report their pain. The purpose of this paper is to discuss the state of observation of pain, primarily focusing on pain behavior tool development, providing an overview of current pain tools and discussing the challenges at this stage of the science, including the issue of assessing pain intensity. We also recommend a number of areas to prioritize future research with the goal to advance effective pain assessment in older persons with dementia. Central to these recommendations is the refinement of existing tools to incorporate those behaviors most predictive of pain in persons with dementia as the science progresses in this area. The future of pain observation in dementia is poised for considerable advancement through these refinements of tools and techniques. Improving our ability to detect and evaluate pain in the vulnerable population unable to self-report their pain, through the results of these suggested research priorities, will likely assist in addressing the related suffering that results from unrecognized and untreated pain., (Copyright© Bentham Science Publishers; For any queries, please email at epub@benthamscience.org.)

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.

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.

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., (Copyright © 2013 American Society for Pain Management Nursing. Published by Elsevier Inc. All rights reserved.)

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).

Background: Studies on pain and pain prevalence in older people with dementia are limited compared to those on cognitively intact older people. Pain prevalence rates in older people with dementia are estimated to be between 28% and 83%., Aims: This study aimed to explore pain prevalence in nursing home residents with dementia using observational scale PACSLAC-D, and to identify the association between pain prevalence and (dementia) demographic parameters such as cognitive status, gender, analgesic use and co-morbidity., Methods: Using an observational study design, 117 residents were observed and assessed for pain during personal morning care. Prevalence data were calculated and regression analyses applied., Results: This study showed that almost half of the participants (47%) experienced pain to some extent. However, overall pain intensity scores were relatively mild. Among the independent variables, co-morbidities, analgesic use and the adjusted interaction term 'co-morbidities+analgesic use' had the strongest associations with pain and were thus shown to be valid significant predictors., Conclusion: With its relatively new approach of measuring pain using an observational scale, this study confirms the expectation gleaned from other studies on less impaired older populations: namely, that pain prevalence in older residents with dementia in Dutch nursing homes is high.

Background: Aging is known to be associated with a high prevalence (up to 80%) of persistent pain among residents of nursing homes. However, even with high pain prevalence rates, nursing home residents are at risk for undertreatment. Knowledge deficits and beliefs among nurses influence staff behaviour in pain assessment and management., Objectives: To develop a psychometrically sound questionnaire and to gather information about knowledge and beliefs of nursing staff regarding various aspects of pain in elderly patients with dementia. In addition, the differences among several categories of nurses (based on educational level and work experience) with respect to beliefs about pain were investigated., Methods: Participants were 123 staff members of psychogeriatric wards in two nursing homes in the Netherlands (mean of 11.4 years of experience). Their results were compared with those of two groups of nurses, one consisting of 25 registered nurse PhD students in nursing science and the other consisting of 20 trainee pain nurse specialists., Results: The main findings indicate that nursing home staff respondents showed knowledge deficits about several aspects of pain, even though they were satisfied about the way pain was assessed and treated at their wards. Specific knowledge deficits were found regarding pain treatment and medication in elderly nursing home residents. Staff educational level seemed to influence their beliefs and knowledge about pain in elderly nursing home patients.

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.

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.

Purpose Cancer pain is a prevalent and distressing symptom. To enhance self-management in outpatients, a multi-component intervention was developed, integrating patient self-management and professional care through healthcare technology. This article describes feasibility of the intervention in everyday practice. Method Patients with moderate to severe cancer pain (n = 11) and registered nurses specialized in pain and palliative care (n = 3) participated in a four-week study. The intervention involved daily monitoring, graphical feedback, education, and advice by means of a mobile application for patients and a web application for nurses. Learnability, usability and desirability were measured in patients with a 20-item questionnaire (1–5 scale), higher scores indicating better feasibility. Patients' adherence was based on completion rates from server logs. Single semi-structured interviews with patients and a focus group interview with nurses provided insight into experiences. Results Questionnaire findings confirmed learnability (4.8), usability (4.8) and desirability (4.6) of the application for patients. Average completion rates were 76.8% for pain monitoring, 50.4% for medication monitoring and 100% for education sessions. Interviews revealed that patients were pleased with the simplicity of the mobile application and appreciated different components. Nurses agreed upon the added value and were mostly positive about the possibilities of the web application. Patients and nurses provided ideas for improvements relating to the content and technical performance of the intervention. Conclusions Study results demonstrate feasibility of the intervention in everyday practice. Provided that content-related and technical adjustments are made, the intervention enables patients with cancer pain to practice self-management and nurses to remotely support these patients. [ABSTRACT FROM AUTHOR]

Aims and objectives This study investigates health-related quality of life in older patients, over one year following an intensive care unit stay. Background Health-related quality of life is an important outcome when assessing long-term effectiveness of intensive care treatment, and to assist patients, their relatives and healthcare professionals in making treatment decisions. Design Prospective non-randomised longitudinal study. Methods The Short Form Health Survey 36 was administered 1 week after an intensive care stay (retrospective baseline), and after six months and 12 months to the study population and to an age-matched comparison group at recruitment (baseline), and after six months and 12 months. Demographic data, admission diagnosis, length of stay, severity of illness, pain, anxiety, agitation, and intratracheal suctioning, turning and intubation were recorded. Recruitment period: December 2008 to April 2011. Results Health-related quality of life of the older patients was significantly lower than the comparison group, both before and after the intensive care unit stay, and showed great individual variability. Within group scores, however, were stable over the year. Both physical and mental health scores were lower for the older patients. Renal failure, cardiac surgery and illness severity were associated with lower physical health scores. Cardiovascular illness, intratracheal suctioning and turning were associated with lower mental health scores. Conclusions Health-related quality of life was lower in older patients than in the age-matched group but remained stable over one year. Relevance to clinical practice Older patients with severe illnesses, acute renal failure or who have had cardiac surgery, need additional support after hospital discharge due to functional restrictions. Discharge planning should ensure that this support would be provided. Special attention should be given to develop and use methods to reduce distress during routine intensive care interventions such as intratracheal suctioning or turning. [ABSTRACT FROM AUTHOR]

Aims and objectives This study investigated whether an intensive care unit ( ICU) stay is associated with persistent pain, anxiety and agitation in critically ill older patients. Background Patients hospitalised in the ICU are at risk for experiencing pain, anxiety and agitation, but long-term consequences for older patients have rarely been investigated. Design Prospective nonrandomised longitudinal study. Methods Pain, anxiety and agitation, measured with a numeric rating scale (0-10), were assessed in older patients (≥65 years) hospitalised in the medical-surgical ICU of a university hospital. Agitation during the ICU was assessed with the Richmond Agitation-Sedation Scale. Data collection occurred during the ICU, one week after the stay and six and 12 months after hospital discharge. Data were collected from an age-matched community-based comparison group at recruitment and after six and 12 months. Study recruitment took place from December 2008-April 2011. Results This study included 145 older patients ( ICU group) and 146 comparison group participants. Pain was higher in the ICU group one week after discharge, although pain levels in general were low. Both groups reported no or low levels of pain after six and 12 months. Anxiety levels in general were low, although higher in the ICU group one week after ICU discharge. After six and 12 months, anxiety in both groups was comparable. Throughout the study, levels of agitation were similar in both groups. Conclusions Critically ill older patients did not experience increased pain, anxiety or agitation 12 months after an ICU stay. Relevance to clinical practice This study positively shows that an ICU stay is not associated with persistent pain, anxiety and agitation thus providing additional information to older patients and their families when making intensive care treatment decisions. Adequate management of pain during and after an ICU stay may minimise the suffering of older patients. [ABSTRACT FROM AUTHOR]

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. [ABSTRACT FROM AUTHOR]

Abstract: Objectives: We sought to determine a cutoff score for the observational Pain Assessment in Advanced Dementia (PAINAD), to adequately assess pain in clinical nursing home practice and research. Design and Setting: We used data from multiple sources. We performed a literature review on PAINAD, performed secondary data analysis of a study examining psychometric properties of PAINAD in nursing home patients with dementia, and performed another study in nursing home patients with dementia specifically aimed at determining a cutoff score for PAINAD. Participants: Patients with dementia in long term care facilities. Measurements: We related PAINAD scores (range 0 to 10) to (1) self-reported and proxy-reported pain by global clinical judgment and (2) scores on another pain assessment instrument (DOLOPLUS-2), and (3) we compared scores between painful and supposedly less painful conditions. Results: Findings from this study showed that a cutoff value of 2 should serve as a trigger for a trial with pain treatment. Although the majority of patients scoring 1 or 0 were not in pain, pain could be ruled out. Conclusion: Based on the findings of multiple available data sources, we recommend that a PAINAD score of 2 or more can be used as an indicator of probable pain. A score of 1 is a sign to be attentive to possible pain. Future work may focus on cutoff scores for the presence of pain and severe pain in other frequently used pain tools, and on further development of methodology to assess cutoff scores. [Copyright &y& Elsevier]

Title. Improving the clinical usefulness of a behavioural pain scale for older people with dementia Aim. This paper is a description of the process of item reduction as part of the construction of the Pain Assessment Checklist for Seniors with Limited Ability to Communicate to assess pain in Dutch older nursing home residents with dementia. Background. A valid and reliable clinically useful tool is important for assessing pain in people with dementia. The Pain Assessment Checklist for Seniors with Limited Ability to Communicate has demonstrated good inter- and intra-rater reliability and evidence of construct validity. However, nurses found the scale too long for clinical use. Methods. In an observational study in 2005, nursing home patients ( n = 128) were observed while receiving an influenza injection, and a selection of patients were also assessed at a patient-specific pain moment. Internal consistency and Principal Component Analysis were used to refine the scale, to examine the psychometric quality and underlying factor structure of the scale. Results. A brief and manageable version of the Pain Assessment Checklist for Seniors with Limited Ability to Communicate in Dutch was developed, with a three-component solution including 24 items. This version had high levels of internal consistency for the complete scale (Cronbach's alpha range 0·82–0·86) and for all subscales (alpha range 0·72–0·82). Social–emotional items played a significant role in detecting pain. Conclusion. It is important to have a valid, reliable, brief and manageable pain scale available for the nursing home setting. Further research is needed to examine the adequacy and effectiveness of the scale in daily clinical practice. [ABSTRACT FROM AUTHOR]

zwakhalen s.m.g., van dongen k.a.j., hamers j.p.h. & abu-saad h.h. (2004) Journal of Advanced Nursing 45(3), 236–245 Pain assessment in intellectually disabled people: non-verbal indicators 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. 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. 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. 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. 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. [ABSTRACT FROM AUTHOR]