Mini-Suffering State Examination Research Articles

The German version of the Mini Suffering State Examination (MSSE) for people with advanced dementia living in nursing homes

BackgroundThe Mini Suffering State Examination (MSSE) has been explicitly recommended to assess suffering in dementia patients. This study aimed to develop a German version of the MSSE and assess its psychometric properties involving people with advanced dementia (PAD) in a nursing home setting.MethodsThe MSSE was translated into German, and 95 primary nurses administered it cross-sectionally to 124 PAD in Zurich, Switzerland. The psychometric properties of the German MSSE version were calculated for this population.ResultsThe mean age of the PAD was 83.3 years (SD = 9.1, range = 55–102 years), and 98 of them (79.0%) were women. The Kuder-Richardson Formula 20 coefficient for the entire scale (0.58), the eight items relating to objective health conditions (0.39), and the professional and family estimation of the patient’s suffering (0.64) indicated low internal consistency. A confirmatory factor analysis indicated an unsatisfactory fit to a one-factor structure, with a comparative fit index and root mean square error of approximation of 0.71 and 0.08, respectively, and a Tucker–Lewis index of 0.64. The MSSE total score was significantly but moderately correlated with the total scores of the Symptom Management–End-of-Life with Dementia (SM-EOLD) scale (Pearson’s correlation coefficient (r) = -0.44; p < 0.05), the physical suffering scores (r = 0.41; p < 0.05), and the psychological suffering scores (r = 0.55; p < 0.05).ConclusionsThe German version of the MSSE questionnaire did not perform well in the nursing home setting involving PAD. The instrument had low internal consistency, doubtful validity, and could not discriminate between suffering and other distressing symptoms. We do not recommend its use in this population.

Psychometric Testing of the Spanish Modified Version of the Mini-Suffering State Examination.

Background: The mini-suffering state examination is a valid and reliable measure that have been used to assess suffering in patients with advanced cancer. The aim of this study was to carry out a psychometric analysis of the Spanish version of the mini-suffering state examination. Method: A validation study was conducted. Seventy-two informal caregivers of deceased patients in palliative care were included in this study. A psychometric testing of content validity, internal consistency, and convergent validity with the Spanish version of the quality of dying and death questionnaire was performed. Results: The original instrument was modified to be used by informal caregivers. The content validity was acceptable (0.96), and the internal consistency was moderate (α = 0.67). Convergent validity was demonstrated (r = −0.64). Conclusion: The Spanish modified version of the MSSE showed satisfactory measurement properties. The Spanish modified version of MSSE can be useful to facilitate screening, monitor progress, and guide treatment decisions in end-of-life cancer patients.

Cross-cultural adaptation and psychometric testing of the Quality of Dying and Death Questionnaire for the Spanish population.

Many measurements have been developed to assess the quality of death (QoD). Among these, the Quality of Dying and Death Questionnaire (QODD) is the most widely studied and best validated. Informal carers and health professionals who care for the patient during their last days of life can complete this assessment tool. The aim of the study is to carry out a cross-cultural adaptation and a psychometric analysis of the QODD for the Spanish population. The translation was performed using a double forward and backward method. An expert panel evaluated the content validity. The questionnaire was tested in a sample of 72 Spanish-speaking adult carers of deceased cancer patients. A psychometric analysis was performed to evaluate internal consistency, divergent criterion-related validity with the Mini-Suffering State Examination (MSSE) and concurrent criterion-related validity with the Palliative Outcome Scale (POS). Some items were deleted and modified to create the Spanish version of the QODD (QODD-ESP-26). The instrument was readable and acceptable. The content validity index was 0.96, suggesting that all items are relevant for the measure of the QoD. This questionnaire showed high internal consistency (Cronbach's α coefficient = 0.88). Divergent validity with MSSE (r = -0.64) and convergent validity with POS (r = -0.61) were also demonstrated. The QODD-ESP-26 is a valid and reliable instrument for the assessment of the QoD of deceased cancer patients that can be used in a clinical and research setting.

Aminoff Suffering Syndrome: A Challenge for Medical and Nursing Staff during End-of-Life Care: Open Letter and Proposals

The diagnosis of Aminoff Suffering Syndrome in advanced dementia determined by measuring the suffering level of patients according to the Mini Suffering State Examination (MSSE) scale — facilitates acceleration and intensity of care by the nursing staff in order to prevent and relieve suffering. Relief of Suffering Units for patients with Aminoff Suffering Syndrome should be an integral part of any medical department or nursing home that specializes in caring for elderly people. Aminoff Suffering Syndrome at the end of life could, and should be diagnosed, prevented and diminished. The treatment of patients with Aminoff Suffering Syndrome at the end of life is a genuine challenge for medical and nursing personnel. Our proposals for further experimental studies at the end of life are the diagnosis of Aminoff Suffering Syndrome in dying patients with cancer, AIDS, cardiac, pulmonary, kidney, liver and other terminal diseases. We recommend that such studies should be performed at all medical settings.

Not Calm and Aminoff Suffering Syndrome in Advanced Alzheimer's Disease.

We studied 183 patients with advanced dementia who had been admitted to the Geriatric-Internal Medicine Department of a general hospital, with a 1 year follow-up evaluated by Mini-Suffering State Examination (MSSE) scores on first days after admission. The not calm compared to calm patients with advanced dementia had a high suffering level (6.12 ± 2.16 versus 3.21 ± 1.71) with a statistically significant difference (P = 0.001). The not calm patients were sicker, a higher percentage had fever (P = 0.005), elevated levels of white blood cells WBC (P = 0.003) and C-reactive protein (CRP) (P = 0.020). The Kaplan-Meier function analysis showed a shorter survival of not calm versus calm advanced dementia patients, with a statistically significant difference (Log Rank [Mantel-Cox] P = 0.002). Not calm in advanced dementia patients is the first item of the MSSE and is a very important symptom of Aminoff Suffering Syndrome.

Measuring End-of-Life Care and Outcomes in Residential Care/Assisted Living and Nursing Homes

ContextThe two primary residential options for older adults who require supportive care are nursing homes and residential care/assisted living. More than one-quarter of all deaths in the U.S. occur in these settings. Although the information available on end of life in long-term care has been growing, the comparative suitability of various measures to guide this work is unknown. ObjectivesTo determine the optimal measures to assess end-of-life care and outcomes in nursing homes and residential care/assisted living. MethodsA total of 264 family members of decedents from 118 settings were interviewed and provided data on 11 instruments that have been used in, but not necessarily developed for, long-term care populations; Overall, 20 scales and subscales/indices were evaluated. Measures were compared on their psychometric properties and the extent to which they discriminated among important resident, family, and setting characteristics. ResultsPrioritizing measures that distinguish the assessment of care from the assessment of dying, and secondarily that exhibit an acceptable factor structure, this study recommends two measures of care—the Family Perceptions of Physician—Family Caregiver Communication and the End of Life in Dementia (EOLD)-Satisfaction With Care—and two measures of outcomes—the EOLD-Symptom Management and the EOLD-Comfort Assessment in Dying. An additional measure to assess outcomes is the Mini-Suffering State Examination (MSSE). The care measures and the MSSE are especially valuable as they discriminate between decedents who were and were not transferred immediately before death, an important outcome, and whether the family expected the death, a useful target for intervention. ConclusionDespite these recommendations, measurement selection should be informed not only on the basis of psychometric properties but also by specific clinical and research needs. The data in this manuscript will help researchers, clinicians, and administrators understand the implications of choosing various measures for their work.

Symptoms and treatment when death is expected in dementia patients in long-term care facilities.

BackgroundAlthough dementia at the end of life is increasingly being studied, we lack prospective observational data on dying patients. In this study symptoms were observed in patients with dementia in the last days of life.MethodsWhen the elderly care physicians in two Dutch nursing homes expected death within one week, symptoms of (dis)comfort, pain and suffering were observed twice daily. For this the Pain Assessment in Advanced Dementia (PAINAD; range 0–10), Discomfort Scale-Dementia of Alzheimer Type (DS-DAT; range 0–27), End-Of-Life in Dementia-Comfort Assessment in Dying (EOLD-CAD; range 14–42) and an adapted version of the Mini-Suffering State Examination (MSSE; range 0–9), were used. Information on care, medical treatment and treatment decisions were also collected.ResultsTwenty-four participants (median age 91 years; 23 females), were observed several times (mean of 4.3 observations (SD 2.6)), until they died. Most participants (n = 15) died from dehydration/cachexia and passed away quietly (n = 22). The mean PAINAD score was 1.0 (SD 1.7), DS-DAT 7.0 (SD 2.1), EOLD-CAD 35.1 (SD 1.7), and MSSE 2.0 (SD 1.7). All participants received morphine, six received antibiotics, and rehydration was prescribed once.ConclusionIn these patients with dementia and expected death, a low symptom burden was observed with validated instruments, also in dehydrated patients without aggressive treatment. A good death is possible, but might be enhanced if the symptom burden is regularly assessed with validated instruments. The use of observation tools may have influenced the physicians to make treatment decisions.

Prognosis of short survival in patients with advanced dementia as diagnosed by Aminoff suffering syndrome.

On the first few days after admission to the Geriatric-Internal Medicine department, the suffering level of patients with advanced dementia (Mini-Mental State Examination 0 of 30) was evaluated according to the Mini-Suffering State Examination (MSSE). During hospitalization, 14.8% (27 of 183) of patients with advanced dementia were died with a mean survival rate of 19.86 ± 26.9 days. The MSSE scale score of died patients was 7.56 ± 1.71 during the first few days of admission which indicates high suffering levels. The MSSE scale score of survived patients with advanced dementia was 3.99 ± 2.10 which confirms their low level of suffering. There was a significant difference (P < .001) between the groups. Patients with dementia who died and were diagnosed as having Aminoff suffering syndrome during the first few days of admission had a high suffering level and short-survival time.

Evaluación del sufrimiento en la demencia avanzada

IntroductionAt the end stage of life of dementia, medical comorbidities are associated with a high degree of patient suffering. The aim of this study was to assess the relationship between the lack of symptoms of discomfort and the level of patient suffering. The relationship with psychological distress and caregiver burden was also clarified. Material and methodsThis study included patients with advanced dementia according to the criteria of the Hospice Enrolment Criteria for End-stage Dementia patients. Patient suffering was assessed with Mini-Suffering State Examination (MSSE). The caregivers were scored by Zarit caregiver burden scale (ZR), and the General Health Questionnaire of Goldberg (GHQ-28). Central tendency and correlation tests were used in the statistical analysis. ResultsThe study recorded data from 71 patients. In the comorbidity of medical symptoms associated with advanced dementia, pneumonia (Spearman's rho: −0.29; P=.01), and malnutrition (Spearman's rho: −0.25; P=.03), showed a significant association with the total scale score of MSSE. There were no significant correlations between patient suffering and caregiver psychological distress (r: 0.11; P=.37), or caregiver burden (r: 0.13; P=.32). ConclusionsThe identification of suffering in patients with advanced dementia is recognised by specific symptoms, such as pneumonia and malnutrition. The caregiver’ psychological distress of the caregiver was shown to be unrelated to patient suffering as measured by MSSE.

From the March issue of JAMDA

Task-oriented “mental practices,” combined with traditional physical or occupational therapy, can improve upper-extremity function in patients recovering from subacute strokes, according to a multicenter, prospective, randomized clinical trial. Imagining movement, without physically acting, changes specific brain activity, said researcher Annick A.A. Timmermans, PhD, of the Maastricht University in the Netherlands and her colleagues. They compared 6 weeks of mental practice with traditional stroke therapy plus neurodevelopmental therapy, in which a patient is taught movements considered keys to recovery. The team recruited 42 patients from rehabilitation departments and randomized them to receive video-instructed mental practice three times a day or neurodevelopmental therapy and rehabilitation. The researchers measured improvement by patients' scores on Fugi-Meyer, Wolf Motor Function, and Frenchay Arm tests, as well as accelerometry. Only the patients using mental practice showed significant improvement on the Frenchay Arm test. Both groups showed improvements on the Fugi-Meyer and Wolf Motor Function tests and on accelerometry. “Persons after stroke do improve significantly on the skills they trained on with mental practice in addition to therapy as usual,” Dr. Timmermans said in an interview. “However, the modus, intensity, and frequency of training were not enough to find differential effects with training by means of exercises that are based on neurodevelopmental therapy.” “Mental practice is a promising intervention for persons after stroke,” but further research is needed, she added. Source: Effect of Mental Practice on the Improvement of Function and Daily Activity Performance of the Upper Extremity in Patients With Subacute Stroke: A Randomized Clinical Trial – A. Timmermans et al. After testing 10 ways to measure the quality of end-of-life care and the quality of dying in long-term care settings, researchers in the United States and the Netherlands recommended the End-of-Life in Dementia-Satisfaction with Care (EOLD-SWC) instrument for assessing care and the End-of-Life in Dementia-Comfort Assessment at Dying (EOLD-CAD) and the Mini-Suffering State Examination (MSSE) instruments for measuring quality of dying. The team, led by Mirjam C. van Soest-Poortvliet of the EMGO Institute for Health and Care Research, Amsterdam, had 264 families of deceased nursing home residents in the United States, and 70 families and 103 caregivers of deceased nursing home residents in the Netherlands complete interviews and questionnaires. The three assessment instruments were recommended because they best met the criteria that the researchers had established. “Our overview of measurement properties is unique in that it is the only available overview of the performance of end-of-life instruments in two parallel studies showing performance on feasibility, validity and reliability,” the researchers said. “This overview allows for comparison of instruments because we examined all instruments simultaneously in the same study population. Based on the measurement properties, we were able to recommend the best instruments to measure [quality of end-of-life care and quality of dying] using empirical, comparative data. This overview may also aid selecting an instrument for specific purposes.” Source: Selecting the Best Instruments to Measure Quality of End-of-Life Care and Quality of Dying in Long Term Care – M.C. van Soest-Poortvliet et al.

Selecting the Best Instruments to Measure Quality of End-of-Life Care and Quality of Dying in Long Term Care

To compare available instruments and investigate which best measure the quality of end-of-life care (QOC) and quality of dying (QOD) in long term care settings, in terms of validity, reliability, and feasibility. Family and professional caregivers of long term care decedents completed postdeath interviews and questionnaires between November 2007 and April 2009. Nursing home and residential care/assisted living settings in the United States and the Netherlands. Two hundred and sixty four families of decedents with (48%) and without (52%) dementia in the United States, and 70 families and 103 professional caregivers of decedents with dementia in The Netherlands. Ten instruments to evaluate the QOC and QOD in long term care, an additional overall assessment of QOC/QOD, and an assessment of the perception of the relevance and ease of use of each instrument. Criteria for validity, reliability, and feasibility were set forth for good, intermediate, and poor performance. None of the instruments scored positively on all criteria. In both countries, of the QOC instruments, the End-of-Life in Dementia-Satisfaction With Care (EOLD-SWC) best met the criteria, followed by the Family Assessment of Treatment at the End-of-Life Short Version, the Family Perception of Care Scale, and Family Perception of Physician-Family Caregiver Communication. Of the QOD instruments, the End-of-Life in Dementia-Comfort Assessment at Dying (EOLD-CAD) and Mini-Suffering State Examination (MSSE) met more of the criteria than others. The EOLD-CAD performed better on content and construct validity than the MSSE. The MSSE performed better on feasibility. We recommend the EOLD-SWC to measure QOC, and the EOLD-CAD and MSSE to measure QOD in populations with dementia and in mixed long term care populations of nursing home or residential care home/assisted living residents, because they performed best in both countries. Use of the same instruments allows for comparison of the results between studies.

End-stage dementia: Aminoff suffering syndrome and decubitus ulcers

Objective: to study possible interrelations between decubitus ulcers and Aminoff suffering syndrome in end-stage dementia (ESD).Subjects: a cohort study of 200 ESD patients with a six-month follow-up period.Methods: interrelations between decubitus ulcers and Mini-Suffering State Examination scores on admission were studied.Results: on the day of admission to the Geriatric Department, 40% of ESD patients, of whom 63.8% (51/80) were male, suffered from decubitus ulcers (80/200). Patients with decubitus ulcers had a higher Mini-Suffering State Examination score (5.49 + 2.17) than those without bedsores (3.48 ± 2.22), with a significant difference ( P &lt; 0.0001). During a six-month follow-up period, 71.2% (57/80) of end-stage patients with decubitus ulcers were diagnosed as having Aminoff suffering syndrome and subsequently died, versus 45.8% (55/120) ESD patients who had not bedsores ( P &lt; 0.0001).Conclusions: Decubitus ulcers contribute to the development of Aminoff suffering syndrome in ESD.

Measuring the Quality of Dying and Quality of Care When Dying in Long-Term Care Settings: A Qualitative Content Analysis of Available Instruments

Context Long-term care (LTC) settings have become a significant site for end-of-life care; consequently, instruments that assess the quality of dying and care may be useful in these settings. Objectives To evaluate the content of available measurement instruments to assess the quality of dying and care when dying. Methods Qualitative content analysis to categorize items as structure of care, process of care, satisfaction with health care (the first three representing quality of care and its evaluation), quality of dying, or patient factors. Results Instruments that measure mostly quality of care and its evaluation are the Family Perception of Physician-Family Caregiver Communication, End-of-Life in Dementia (EOLD) Satisfaction With Care, Family Perception of Care Scale, Toolkit of Instruments to Measure End-of-Life Care after-death bereaved family member interview (nursing home version), and the Family Assessment of Treatment at the End-of-Life Short version. Instruments measuring quality of dying are the EOLD-Comfort Assessment in Dying, EOLD-Symptom Management, Mini-Suffering State Examination, and Palliative Care Outcome Scale. The Quality of Dying in Long-Term Care measures care and dying. The Minimum Data Set-Palliative Care measures mostly dying and patient factors. The instruments differ in dementia specificity, time of administration, and respondent. Conclusion Instruments that assess quality when dying differ in several ways and most do not measure a single construct, which is relevant to guiding and evaluating care. Comparing psychometric properties and usefulness of instruments that measure similar constructs is the next step in determining which are best suited for use in LTC.

Relief of Suffering with Dementia Units

This paper proposes a new, alternative approach and setting for end-stage dementia patients with Aminoff Suffering Syndrome (ASS) that could pertain to the Israeli setting and could possibly also be acceptable in other countries. Short hospitalization periods of approximately 1 month and treatment in Relief of Suffering End-of-Life with Dementia Units may be a new palliative approach and present a possible solution for coping with the horrendous burden of the suffering of dementia patients, their families, and the medical and nursing staff. Aminoff Suffering Syndrome (ASS) in advanced dementia is the proposed symptomatology and pathological entity that is characterized by a high Mini Suffering State Examination (MSSE) scale score, &lt;6 months survival, irreversible and intractable aggravation of suffering and medical condition until demise.

End Stage Dementia and Entropy Definition of Suffering

Objectives: A new definition of human suffering and satisfaction according to the entropy hypothesis may fa- cilitate comprehension of health, disease and the aging process. Methods: A cohort study of 71 patients (28 females, 43 males), with very advanced dementia, who died in our ward dur- ing the study period. The intense suffering level of end-stage dementia patients was evaluated by the Mini-Suffering State Examination (MSSE) scale. Results: Suffering level in end-stage dementia has a significant correlation with short survival, advancing age, more se- vere illness, malnutrition, the existence of decubitus ulcers, and the administration of medications. Established correla- tions could be explained by the enhanced level of the patients' body entropy. Discussion: Suffering and satisfaction are functional levels of human entropy. An elevated level of human entropy is a measure of disorder, a process of aging and torment of the patient. a perceived threat to the integrity of the self, perceived help- lessness in the face of that threat, and exhaustion of psycho- social and personal resources of coping. The model proposed by Cherny, Coyle, Foley (10) described suffering as an aver- sive experience, characterized by the perception of personal distress which is generated by adverse factors that undermine quality-of-life. Cherny (11) proposed the triangular model of suffering and taxonomy of factors, prevalence of distress experienced by patients, their families, and their attending health care professionals.

Mini-Suffering State Examination: Suffering and Survival of End-of-Life Cancer Patients in a Hospice Setting

The objective of this study was to evaluate suffering of end-of-life cancer patients during their final hospice stay and the possible interrelations with survival. A cohort of consecutive patients hospitalized in an inpatient cancer hospice of a tertiary hospital was used for this study. Patients were evaluated upon admission and once weekly by the Mini-Suffering State Examination (MSSE). The distribution of patients for each MSSE score group, changes in MSSE scores (total and for each item of scale), and MSSE interrelation with clinical parameters associated with patients' condition during hospitalization were studied. In addition, the interrelation of MSSE score and survival was examined. Documentation of a high suffering level by the MSSE scale helps in identifying end-of-life cancer patients expected to benefit from enrollment in a hospice setting, provides quantitative information about various symptom dimensions, and may improve medical management and facilitate communication between these patients and caregivers.

Mini-Suffering State Examination Scale: Possible Key Criterion for 6-Month Survival and Mortality of Critically Ill Dementia Patients

Six months of survival as a key criterion is extremely important for decision making in enrollment of critically ill patients to palliative settings. This was a prospective cohort study with 6 months of follow-up during a 24-month period performed in the Division of Geriatric Medicine in a tertiary general hospital. One-hundred three consecutively admitted, bedridden patients with end-stage dementia were evaluated. The Mini-Suffering State Examination scale was performed. Interrelations between the Mini-Suffering State Examination score at admission and 6-month survival and mortality were evaluated. A significant difference was proven among survival curves of subgroups of patients according to the mini scores (0-3, 4-6, 7-10). Survival was shorter and mortality higher in patients with a high Mini-Suffering State Examination score, as shown by the Kaplan-Meier method using the log rank (P=.001) and Breslow tests (P=.001). The Mini-Suffering State Examination scale is useful for predicting the last 6 months of survival and mortality of end-stage dementia patients.

Their last 6 months: suffering and survival of end-stage dementia patients

to study possible interrelations existing between the Mini-Suffering State Examination (MSSE) scale and survival of end-stage dementia patients. a cohort study of 252 end-stage dementia patients with a 6-month follow-up period, conducted in a Division of Geriatric Medicine of a general hospital. We included 134 consecutive bedridden end-stage dementia patients admitted during a 36-month period, and surviving in the ward for <6 months. Interrelations between survival and admission MSSE scores were studied. compared with patients surviving >/=6 months, those dying within 6 months were significantly older (P = 0.014). Mean survival time was 57.76 +/- 9.73 days for the low MSSE score group (29 patients, MSSE 2.24 +/- 0.99), 44.70 +/- 5.99 days for the intermediate MSSE score group (53 patients, MSSE 4.92 +/- 0.83) and 27.54 +/- 4.16 days for the high MSSE score group (52 patients, MSSE 8.06 +/- 1.00). Differences between the survival times of these three MSSE score groups were statistically significant (Kaplan-Meier Analysis Log Rank P = 0.0018, Breslow P = 0.0027). The Cox proportional hazard model of survival showed a significant interrelation of high MSSE scores and shorter survival (P = 0.013). documentation of a high-suffering level by the MSSE scale helps in identifying end-stage dementia patients expected to benefit from enrolment into a palliative care setting.

Measuring the suffering of end-stage dementia: reliability and validity of the Mini-Suffering State Examination

Assessment of suffering is extremely important in dying end-stage dementia patients (ESDP). We have developed and examined the reliability and validity of the Mini-Suffering State Examination (MSSE), in 103 consecutive bedridden ESDP. Main outcome measures included inter-observer reliability and concurrent validity. Reliability of the MSSE questionnaire was satisfactory, with Cronbach α values of 0.735 and 0.718 for the two physicians (Ph-1, Ph-2), respectively. The κ agreement coefficient was 0.791. There was a high agreement for seven items ( κ 0.882–0.972) and a substantial agreement for the other three items ( κ 0.621–0.682) of the MSSE. MSSE was validated versus the comfort assessment in dying with dementia (CAD-EOLD) scale and resulted in a significant Pearson correlation ( r=−0.796, P<0.001). We conclude that the MSSE scale is a reliable and valid clinical tool, recommended for evaluating the severity of the patient’s condition and the level of suffering of ESDP. Use of MSSE may improve medical management and facilitate communication between patients and caregivers.