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Unbearability of suffering at the end of life: the development of a new measuring device, the SOS-V.

ABSTRACT: BACKGROUND: Unbearable suffering is an important issue in end-of-life decisions. However, there has been no systematic, prospective, patient-oriented research which has focused on unbearable suffering, nor is there a suitable measurement instrument. This article describes the methodological development of a quantitative instrument to measure the nature and intensity of unbearable suffering, practical aspects of its use in end-stage cancer patients in general practice, and studies content validity and psychometric properties. METHODS: Recognizing the conceptual difference between unbearability of suffering and extent or intensity of suffering, we developed an instrument. The compilation of aspects considered to be of importance was based on a literature search. Psychometric properties were determined on results of the first interviews with 64 end-stage cancer patients that participated in a longitudinal study in the Netherlands. RESULTS: The instrument measures five domains: medical signs and symptoms, loss of function, personal aspects, aspects of environment, and nature and prognosis of the disease. Sixty nine aspects were investigated, and an overall score was asked. In 64 end-stage cancer patients the instrument was used in total 153 times with an average interview time varying from 20-40 minutes. Cronbachs alpha's of the subscales were in majority above 0.7. The sum scores of (sub)scales were correlated strongly to overall measures on suffering. CONCLUSION: The SOS-V is an instrument for measuring the unbearability of suffering in end-stage cancer patients with good content validity and psychometric properties, which is feasible to be used in practice. This structured instrument makes it possible to identify and study unbearable suffering in a quantitative and patient-oriented way.

SUBMITTER: Ruijs KD

PROVIDER: S-EPMC2777135 | biostudies-literature | 2009

REPOSITORIES: biostudies-literature

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Unbearability of suffering at the end of life: the development of a new measuring device, the SOS-V.

Ruijs Kees D M KD Onwuteaka-Philipsen Bregje D BD van der Wal Gerrit G Kerkhof Ad J F M AJ

BMC palliative care 20091103

<h4>Background</h4>Unbearable suffering is an important issue in end-of-life decisions. However, there has been no systematic, prospective, patient-oriented research which has focused on unbearable suffering, nor is there a suitable measurement instrument. This article describes the methodological development of a quantitative instrument to measure the nature and intensity of unbearable suffering, practical aspects of its use in end-stage cancer patients in general practice, and studies content ...[more]

PMID: 19887004

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Project description:BACKGROUND: Anticoagulation can reduce quality of life, and different models of anticoagulation management might have different impacts on satisfaction with this component of medical care. Yet, to our knowledge, there are no scales measuring quality of life and satisfaction with anticoagulation that can be generalized across different models of anticoagulation management. We describe the development and preliminary validation of such an instrument - the Duke Anticoagulation Satisfaction Scale (DASS). METHODS: The DASS is a 25-item scale addressing the (a) negative impacts of anticoagulation (limitations, hassles and burdens); and (b) positive impacts of anticoagulation (confidence, reassurance, satisfaction). Each item has 7 possible responses. The DASS was administered to 262 patients currently receiving oral anticoagulation. Scales measuring generic quality of life, satisfaction with medical care, and tendency to provide socially desirable responses were also administered. Statistical analysis included assessment of item variability, internal consistency (Cronbach's alpha), scale structure (factor analysis), and correlations between the DASS and demographic variables, clinical characteristics, and scores on the above scales. A follow-up study of 105 additional patients assessed test-retest reliability. RESULTS: 220 subjects answered all items. Ceiling and floor effects were modest, and 25 of the 27 proposed items grouped into 2 factors (positive impacts, negative impacts, this latter factor being potentially subdivided into limitations versus hassles and burdens). Each factor had a high degree of internal consistency (Cronbach's alpha 0.78-0.91). The limitations and hassles factors consistently correlated with the SF-36 scales measuring generic quality of life, while the positive psychological impact scale correlated with age and time on anticoagulation. The intra-class correlation coefficient for test-retest reliability was 0.80. CONCLUSIONS: The DASS has demonstrated reasonable psychometric properties to date. Further validation is ongoing. To the degree that dissatisfaction with anticoagulation leads to decreased adherence, poorer INR control, and poor clinical outcomes, the DASS has the potential to help identify reasons for dissatisfaction (and positive satisfaction), and thus help to develop interventions to break this cycle. As an instrument designed to be applicable across multiple models of anticoagulation management, the DASS could be crucial in the scientific comparison between those models of care.

Project description:IntroductionThe ability of patients to finalise their affairs at the end of life is an often neglected aspect of quality of life (QOL) measurement in palliative care effectiveness research despite compelling evidence of the high value patients place on this domain.ObjectiveThis paper describes the preliminary development and evaluation of a new, single-item, end-of-life patient-reported outcome measure (EOLPRO) designed to capture changes in the ability of patients to finalise their affairs at the end of life.MethodsCognitive interviews with purposively sampled Australian palliative care patients (N = 9) were analysed thematically to explore content validity. Simultaneously, secondary analysis of data from a randomised controlled trial comparing ketamine and placebo for the management of cancer pain (N = 185) evaluated: construct validity; test-retest reliability; and responsiveness.ResultsPreliminary findings suggest patients interpret the new measure consistently. The EOLPRO captures the ability to complete physical tasks and finalise practical matters although it is unclear whether emotional tasks or resolution of relationship issues are considered. Personal and financial affairs should be separated to allow for differences in ability for these two types of affairs. The significant correlation between performance status and EOLPRO scores (r = 0.41, p<0.01, n = 137) and expected relationships between EOLPRO and proximity to death and constipation demonstrated construct validity. Pre- and post-treatment EOLPRO scores moderately agreed (n = 14, κ = 0.52 [95% CI 0.19, 0.84]) supporting reliability. The measure's apparent lack of sensitivity to discriminate between treatment responders and non-responders may be confounded.ConclusionBased on the preliminary findings, the EOLPRO should be separated into 'personal' and 'financial' affairs with further testing suggested, particularly to verify coverage and responsiveness. Initial evaluation suggests that the single-item EOLPRO is a useful addition to QOL outcome measurement in palliative care effectiveness research because common palliative care specific QOL questionnaires do not include or explicitly capture this domain.

Project description:ObjectiveTo construct a new measure of end-of-life (EoL) spending-the elevated EoL spending-and examine its associations with measures of quality of care and patient and physician preferences in comparison with the commonly used total Medicare EoL spending measures.Data sources and study settingMedicare claims data for a 20% random sample of Medicare fee-for-service (FFS) patients, from the health care quality data for 2015-2016, from the Hospital Compare and the Medicare Geographic Variation public use file, and survey data about patient and physician preferences.Study designWe constructed the elevated EoL spending measure as the differential monthly spending between decedents and survivors with the same one-year mortality risk, where the risk was predicted using machine learning models. We then examined the associations of the hospital referral region (HRR)-level elevated EoL spending with various health care quality measures and with the survey-elicited patient and provider preferences. We also examined analogous associations for monthly total EoL spending on decedents.Data extraction methodsMedicare FFS patients who were continuously enrolled in Medicare Parts A & B in 2015 and were alive as of January 1, 2016.Principal findingsWe found a large variation in the elevated EoL spending across HRRs in the United States. There was no evidence of an association between HRR-level elevated EoL spending and established health care quality measures, including those specific to EoL care, whereas total EoL spending was positively associated with certain quality of care measures. We also found no evidence that elevated EoL spending was associated with patient preferences for EoL care. However, elevated EoL spending was positively and significantly associated with physician preferences for treatment intensity.ConclusionsOur findings suggested that elevated EoL spending captures different resource use from conventional measures of EoL spending and may be more valuable in identifying potentially wasteful spending.

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Unbearability of suffering at the end of life: the development of a new measuring device, the SOS-V.

Publications

Unbearability of suffering at the end of life: the development of a new measuring device, the SOS-V.

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