Pain in older persons with severe dementia. Psychometric properties of the Mobilization-Observation-Behaviour-Intensity-Dementia (MOBID-2) Pain Scale in a clinical setting.

BACKGROUND: To assess pain in older persons with severe dementia is a challenge due to reduced self-report capacity. Recently, the development and psychometric property testing of the Mobilization-Observation-Behaviour-Intensity-Dementia (MOBID) Pain Scale was described using video-recording. The purpose of this article was to present the further development of this instrument. In MOBID-2 Pain Scale, the assessment of inferred pain intensity is based on patient's pain behaviours in connection with standardized, guided movements of different body parts (Part 1). In addition, MOBID-2 includes the observation of pain behaviours related to internal organs, head and skin registered on pain drawings and monitored over time (Part 2). OBJECTIVE: The aim of this study was to examine psychometric properties of the MOBID-2 Pain Scale, like inter-rater and test-retest reliability, internal consistency, as well as face-, construct- and concurrent validity. SUBJECTS AND SETTING: Patients with severe dementia (n = 77) were examined by 28 primary caregivers in clinical practice, who concurrently and independently completed the MOBID-2 Pain Scale. Characteristics of the patients' pain were also investigated by their physicians (n = 4). RESULTS: Prevalence of any pain was 81%, with predominance to the musculoskeletal system, highly associated with the MOBID-2 overall pain score (rho = 0.82). Most frequent and painful were mobilizing legs. Pain in pelvis and/or genital organs was frequently observed. Moderate to excellent agreement was demonstrated for behaviours and pain drawings (kappa = 0.41-0.90 and kappa = 0.46-0.93). Inter-rater and test-retest reliability for pain intensity was very good, ICC (1, 1) ranging 0.80-0.94 and 0.60-0.94. Internal consistency was highly satisfactory; Cronbach's alpha ranging 0.82-0.84. Face-, construct- and concurrent validity was good. Overall pain intensity by MOBID-2 was well correlated with physicians' clinical examination and defined pain variables (rho = 0.41-0.64). CONCLUSION: On the basis of pain behaviours, standardized movements and pain drawings, MOBID-2 Pain Scale was shown to be sufficiently reliable, valid and time-effective for nurses to assess pain in patients with severe dementia.

Pain behaviour and pain intensity in older persons with severe dementia: reliability of the MOBID Pain Scale by video uptake.

Advancing age is associated with high prevalence of dementia, often combined with under-diagnosed and under-treated pain. A nurse-administered assessment tool has been developed to unmask pain during standardised, guided movements, called Mobilisation-Observation-Behaviour-Intensity-Dementia (MOBID) Pain Scale. The aim was to examine intra- and inter-rater reliability of pain behaviour indicators, inferred pain intensity, and the overall MOBID Pain Score. Twenty-six nursing home patients with severe dementia and chronic pain, 11 primary caregivers and three external raters at the Red Cross Nursing Home, Bergen were included. During video uptake the patients were guided by their primary caregivers to standardised movements of different body parts. Pain behaviour indicators (pain noises, facial expression and defence) were registered for each movement with subsequent rating of pain intensity by external raters, who assessed and scored the videos concurrently and independently at day 1, 4 and 8. Facial expression was most commonly observed, followed by pain noises and defence. Repeated assessments increased the number of observed pain behaviours, but did not improve reliability. Inter-rater reliability was highest for noises, followed by defence and facial expression (kappa = 0.44-0.92, kappa = 0.10-0.76 and kappa = 0.05-0.76 respectively, at day 8). Mobilisation of arms and legs were rated most painful. Intra- and inter-rater reliability of overall pain were very good [intraclass correlation coefficient (1,1) ranging 0.92-0.97 and 0.94-0.96 respectively, at day 8]. Reliability of pain intensity scores tended to increase by repeated assessment. Using video uptake, MOBID Pain Scale was shown to be sufficiently reliable to assess pain in older persons with severe dementia.

[On-call physicians in nursing homes]. / Vakttjeneste for leger på sykehjem.

BACKGROUND: Patients in Norwegian nursing homes are old and multimorbid; they often need emergency treatment and regular medical follow-up is a must. The aim of the study was to investigate reasons for contacting a physician and to find out if unnecessary hospitalization can be reduced. MATERIAL AND METHODS: The study took place at Bergen Red Cross Nursing home, which has 174 patients in long-term wards, dementia wards, a short-term ward and a palliative care ward. Contacts to on-call nursing home physicians were recorded (time, ward, problem and measures taken) and assessed in a prospective study of 4 months duration. RESULTS: 319 calls were registered during the 107-day study period, and these resulted in 187 active working hours (92.5 hours for the palliative care unit). Active working hours per patient/week by ward were 0.32 hours for the palliative care unit, 0.07 hours for the short-term ward and 0.03 hours for the long-term wards. Frequent problems were counselling/information (24 %), the abdomen (14 %), the nervous system (13 %), airways (12 %), pain (11 %) and cardiovascular disease (7 %). Admission to a hospital could have been prevented for nine patients. INTERPRETATION: All wards at Bergen Red Cross Nursing home use the 24-hour on-call service frequently. Nursing homes should offer such services to ensure acute and competent treatment and avoid unnecessary transport and hospitalisation.

Mobilization-Observation-Behavior-Intensity-Dementia Pain Scale (MOBID): development and validation of a nurse-administered pain assessment tool for use in dementia.

Pain assessment in older persons with severe cognitive impairment (SCI) is a challenge due to reduced self-report capacity and lack of movement-related pain assessment instruments. The purpose of this article was to describe the development of the Mobilization-Observation-Behaviour-Intensity-Dementia Pain Scale (MOBID) and to investigate aspects of reliability and validity. MOBID is a nurse-administered instrument developed for use in patients with SCI, where presence of pain behavior indicators (pain noises, facial expression, and defense) may be observed during standardized active, guided movements, and then inferred to represent pain intensity. Initially, the MOBID contained seven items (observing at rest, mobilization of the hands, arms, legs, turn over in bed, sitting on bedside, and teeth/mouth care). This was tested in 26 nursing home patients with SCI. Their primary caregivers, five registered nurses and six licensed practical nurses (LPNs), rated the patients' pain intensity during regular morning care, and by MOBID, both at bedside and from video uptakes. Three external raters (LPNs), not knowing the patients, also completed the MOBID by rating the videos. Internal consistency of the MOBID indicated high Cronbach's alpha (alpha=0.90) after deleting the items for observation at rest and observation of teeth/mouth care. MOBID disclosed significantly more pain than did pain scorings during regular morning care, and video observation demonstrated higher pain intensity than bedside scoring. Intertester reliability for inferred pain intensity was high to excellent (intraclass correlation coefficient=0.70-0.96), but varied between poor and excellent for pain behavior indicators (kappa=0.05-0.84). These results suggest that registration of pain behavior indicators during active, guided movements, as performed by the MOBID procedure, is useful to disclose reliable and valid pain intensity scores in patients with SCI.

[Nursing homes as arenas of terminal care--how do we do in practice?]. / Sykehjemmene som arena for terminal omsorg--hvordan gjør vi det i praksis?

40% of all deaths in Norway take place in nursing homes, more than in any other European country. The nursing homes are suitable places for the terminally ill old, provided that they are met by caregivers with the necessary skills in and resources for palliative care. A recently published study from Bergen Red Cross Nursing Home showed that the vast majority of the old in their final days or hours of life need palliative treatment with morphine and other symptom-relieving drugs. 85% of the deaths were expected, a fact that facilitates preparation, communication, ethical decisions and pain control. The most frequent symptoms are dyspnoea and death rattle. Dyspnoea based on terminal heart failure is relieved with subcutaneous application of morphine. The secretions of death rattle are best reduced with hyoscine hydrobromide (scopolamine). In the patient's terminal phase, the crucial factor for proper palliative care is the doctor's skills and commitment. Avoiding the strains associated with unnecessarily prolonging the death process, adequate symptom relief and prevention of unnecessary and strongly annoying transfer of the dying old to hospitals should be aimed for in Norwegian nursing homes.

[Care at the end of life or active euthanasia?]. / Omsorg ved livets slutt eller aktiv dødshjelp?

Estimates for the next 50 years indicate that the number of European citizens above 65 will increase from today's 15 - 20 % to 30 - 40 %. In the same period the number of patients suffering from dementia wills more than double. Norway has the largest percentage of beds in nursing facilities per capita in Europe, more than twice that of most European countries. The dramatic decrease in birth rates in most European countries, with women seeking education and employment, will make proper care for the majority of the weakest elderly a major European challenge. Painful and unnecessary treatments violating basic human rights for weak elderly people suffering from dementia are widespread. The unnecessary life-prolonging medical treatment of the dying in acute wards incurs enormous costs. Options for euthanasia or palliative care are much debated poles regarding the terminally ill in Europe. If a European aim is to guarantee the frail old, that means us, dignity in their last years of life, several needs must be met. Resources now used on acute medicine must be shared with long-term care. These necessary changes will require strong medical and ethical involvement from all physicians.

[Ethical end-of-life decision making in nursing homes]. / Etiske avgjørelser ved livets slutt i sykehjem.

BACKGROUND: A recent publication from Norwegian health authorities describes necessary routines for end-of-life decisions in hospitals. There are no comparable national recommendations regarding patients in nursing homes. 40% of deaths in Norway occur in nursing homes. METHODS: All nursing home physicians in Bergen received an open questionnaire on the practice of ethics, end-of-life-decisions, and palliative care. RESULTS: 15 of the nursing homes physicians responded to the questionnaire, representing three quarters of the nursing homes and 1483 out of 1782 nursing home patients in Bergen (83%). Only two of institutions had written instructions for end-of-life decisions. Two thirds of the physicians considered use of morphine for the dying. Only a minority treated death rattle with scopolamine. 12 out of the 15 physicians administered life prolonging treatment with diuretics facing terminal pulmonary oedema, and 5 out of 15 administered antibiotics to those dying with pneumonia. 0.9% of the patients had a feeding tube. DISCUSSION: A majority of nursing home physicians have a high awareness of and willingness to give priority to end-of-life decisions, communication and palliative care. They ask for national recommendations in this challenging area. Unnecessary life-prolonging treatment and lack of palliative care are still major problems in Norwegian nursing homes.

Culture is a priority for research in end-of-life care in Europe: a research agenda.

CONTEXT: Culture has a profound influence on our understanding of what is appropriate care for patients at the end of life (EoL), but the evidence base is largely nonexistent. OBJECTIVES: An international workshop was organized to compile a research agenda for cultural issues in EoL research, and assess challenges and implications of the integration of the culture concept in different contexts. METHODS: Participant experts were identified from the expert network established through an Internet-based call for expertise on culture and EoL care and from meetings. The workshop comprised presentations of research priorities from country and disciplinary perspectives, and group discussions. Analysis used all data gathered in the workshop and applied standard qualitative techniques. RESULTS: Thirty experts participated in the workshop and identified the following priorities for cross-cultural research: 1) clarifying the concepts of culture and cultural competence; 2) defining EoL in a context of social and cultural diversity, with a focus on concepts of EoL care and bioethics, experiences of receiving and giving EoL care, and care practices in different settings; and 3) developing appropriate methodologies and outcome measurements that address diversity. CONCLUSION: This first pan-European meeting compiled a research agenda, identifying key areas for future research focusing on culture, diversity, and their operationalization. This requires international and multidisciplinary collaboration, which is necessary in the current efforts to synthesize best practices in EoL care.