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A new measure for end of life planning, preparation, and preferences in Huntington disease: HDQLIFE end of life planning.

ABSTRACT: BACKGROUND:Huntington disease is a fatal inherited neurodegenerative disease. Because the end result of Huntington disease is death due to Huntington disease-related causes, there is a need for better understanding and caring for individuals at their end of life. AIM:The purpose of this study was to develop a new measure to evaluate end of life planning. DESIGN:We conducted qualitative focus groups, solicited expert input, and completed a literature review to develop a 16-item measure to evaluate important aspects of end of life planning for Huntington disease. Item response theory and differential item functioning analyses were utilized to examine the psychometric properties of items; exploratory factor analysis was used to establish meaningful subscales. PARTICIPANTS:Participants included 508 individuals with pre-manifest or manifest Huntington disease. RESULTS:Item response theory supported the retention of all 16 items on the huntington disease quality of life ("HDQLIFE") end of life planning measure. Exploratory factor analysis supported a four-factor structure: legal planning, financial planning, preferences for hospice care, and preferences for conditions (locations, surroundings, etc.) at the time of death. Although a handful of items exhibited some evidence of differential item functioning, these items were retained due to their relevant clinical content. The final 16-item scale includes an overall total score and four subscale scores that reflect the different end of life planning constructs. CONCLUSIONS:The 16-item HDQLIFE end of life planning measure demonstrates adequate psychometric properties; it may be a useful tool for clinicians to clarify patients' preferences about end of life care.

SUBMITTER: Carlozzi NE

PROVIDER: S-EPMC5762414 | biostudies-other | 2018 Jan

REPOSITORIES: biostudies-other

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A new measure for end of life planning, preparation, and preferences in Huntington disease: HDQLIFE end of life planning.

Carlozzi Noelle E NE Hahn E A EA Frank S A SA Perlmutter J S JS Downing N D ND McCormack M K MK Barton S S Nance M A MA Schilling S G SG

Journal of neurology 20171115 1

<h4>Background</h4>Huntington disease is a fatal inherited neurodegenerative disease. Because the end result of Huntington disease is death due to Huntington disease-related causes, there is a need for better understanding and caring for individuals at their end of life.<h4>Aim</h4>The purpose of this study was to develop a new measure to evaluate end of life planning.<h4>Design</h4>We conducted qualitative focus groups, solicited expert input, and completed a literature review to develop a 16-i ...[more]

PMID: 29143208

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Project description:AimsEarly engagement in advance care planning (ACP) is recommended in heart failure (HF) management. We investigated the preferences of patients with HF regarding ACP and end-of-life (EOL) care, including their desired timing of ACP initiation.Methods and resultsData were collected using a 92-item questionnaire survey, which was directly distributed to hospitalized patients by dedicated physicians and nurses in a university hospital setting. One-hundred eighty-seven patients agreed to participate (response rate: 92.6%), and 171 completed the survey [valid response rate: 84.7%; men: 67.3%; median age: 73.0 (63.0-81.0) years]. Logistic regression analyses were conducted to identify the predictors of positive attitudes towards ACP. Most recognized ACP as important for their care (n = 127, 74.3%), 48.1% stated that ACP should be initiated after repeated HF hospitalizations in the past year, and 29.0% preferred ACP to begin during the first or second HF hospitalization. Only 21.7% of patients had previously engaged in ACP conversations during HF management. Positive attitudes towards ACP were associated with lower depressive symptoms [two-item Patient Health Questionnaire; odds ratio (OR): 0.75, 95% confidence interval (CI): 0.61-0.92, P-value: 0.006], marriage (OR: 2.53, 95% CI: 1.25-5.12, P-value: 0.010), and a high educational level (OR: 2.66, 95% CI: 1.28-5.56, P-value: 0.009), but not with severity of HF (represented by Seattle Heart Failure Model risk score). Regarding EOL care, while 'Saying what one wants to tell loved ones' (83.4%), 'Dying a natural death' (81.8%), and 'Being able to stay at one's favorite place' (75.6%) were the three most important factors for patients, preferences for 'Receiving sufficient treatment' (56.5%) and 'Knowing what to expect about future condition' (50.3%) were divergent.ConclusionsDespite patients' preferences for ACP conversations, there was a discrepancy between preference and engagement in ACP among patients hospitalized for HF. Patients' preferences regarding EOL care may differ; physicians need to consider the appropriate ACP approach to align with patients' care goals.

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:BackgroundStudies using local samples suggest that racial minorities anticipate a greater preference for life-sustaining treatment when faced with a terminal illness. These studies are limited by size, representation, and insufficient exploration of sociocultural covariables.ObjectiveTo explore racial and ethnic differences in concerns and preferences for medical treatment at the end of life in a national sample, adjusting for sociocultural covariables.DesignDual-language (English/Spanish), mixed-mode (telephone/mail) survey.ParticipantsA total of 2,847 of 4,610 eligible community-dwelling Medicare beneficiaries age 65 or older on July 1, 2003 (62% response).MeasurementsDemographics, education, financial strain, health status, social networks, perceptions of health-care access, quality, and the effectiveness of mechanical ventilation (MV), and concerns and preferences for medical care in the event the respondent had a serious illness and less than 1 year to live.ResultsRespondents included 85% non-Hispanic whites, 4.6% Hispanics, 6.3% blacks, and 4.2% "other" race/ethnicity. More blacks (18%) and Hispanics (15%) than whites (8%) want to die in the hospital; more blacks (28%) and Hispanics (21.2%) than whites (15%) want life-prolonging drugs that make them feel worse all the time; fewer blacks (49%) and Hispanics (57%) than whites (74%) want potentially life-shortening palliative drugs, and more blacks (24%, 36%) and Hispanics (22%, 29%) than whites (13%, 21%) want MV for life extension of 1 week or 1 month, respectively. In multivariable analyses, sociodemographic variables, preference for specialists, and an overly optimistic belief in the effectiveness of MV explained some of the greater preferences for life-sustaining drugs and mechanical ventilation among non-whites. Black race remained an independent predictor of concern about receiving too much treatment [adjusted OR = 2.0 (1.5-2.7)], preference for dying in a hospital [AOR = 2.3 (1.6-3.2)], receiving life-prolonging drugs [1.9 (1.4-2.6)], MV for 1 week [2.3 (1.6-3.3)] or 1 month's [2.1 (1.6-2.9)] life extension, and a preference not to take potentially life-shortening palliative drugs [0.4 (0.3-0.5)]. Hispanic ethnicity remained an independent predictor of preference for dying in the hospital [2.2 (1.3-4.0)] and against potentially life-shortening palliative drugs [0.5 (0.3-0.7)].ConclusionsGreater preference for intensive treatment near the end of life among minority elders is not explained fully by confounding sociocultural variables. Still, most Medicare beneficiaries in all race/ethnic groups prefer not to die in the hospital, to receive life-prolonging drugs that make them feel worse all the time, or to receive MV.

Project description:ImportancePredictive genetic testing in Huntington disease (HD) enables therapeutic trials in HTT gene expansion mutation carriers prior to a motor diagnosis. Progression-free survival (PFS) is the composite of a motor diagnosis or a progression event, whichever comes first.ObjectiveTo determine if PFS provides feasible sample sizes for trials with mutation carriers who have not yet received a motor diagnosis.Design, setting, and participantsThis study uses data from the 2-phase, longitudinal cohort studies called Track and from a longitudinal cohort study called the Cooperative Huntington Observational Research Trial (COHORT). Track had 167 prediagnosis mutation carriers and 156 noncarriers, whereas COHORT had 366 prediagnosis mutation carriers and noncarriers. Track studies were conducted at 4 sites in 4 countries (Canada, France, England, and the Netherlands) from which data were collected from January 17, 2008, through November 17, 2014. The COHORT was conducted at 38 sites in 3 countries (Australia, Canada, and the United States) from which data were collected from February 14, 2006, through December 31, 2009. Results from the Track data were externally validated with data from the COHORT. The required sample size was estimated for a 2-arm prediagnosis clinical trial. Data analysis took place from May 1, 2016, to June 10, 2017.Main outcomes and measuresThe primary end point is PFS. Huntington disease progression events are defined for the Unified Huntington's Disease Rating Scale total motor score, total functional capacity, symbol digit modalities test, and Stroop word test.ResultsOf Track's 167 prediagnosis mutation carriers, 93 (55.6%) were women, and the mean (SD) age was 40.06 (8.92) years; of the 156 noncarriers, 87 (55.7%) were women, and the mean (SD) age was 45.58 (10.30) years. Of the 366 COHORT participants, 229 (62.5%) were women and the mean (SD) age was 42.21 (12.48) years. The PFS curves of the Track mutation carriers showed good external validity with the COHORT mutation carriers after adjusting for initial progression. For required sample size, PFS with a motor diagnosis or total motor score progression required about 4 times fewer participants than a motor diagnosis alone. Including additional cognitive progression events further reduced the number. For example, a 3-year trial with 10% attrition and a treatment effect of 50% requires a total of 661 with motor diagnosis as the survival end point but only 177 with a total motor score PFS.Conclusions and relevanceReasonably sized prediagnosis Huntington disease trials can be planned with PFS, and there is evidence of generalizability of this approach.

Project description:ImportancePolicies and practices that promote advance care planning and advance directive completion implicitly assume that patients' choices for end-of-life (EOL) care are stable over time, even with changes in health status.ObjectiveTo systematically evaluate the evidence on the stability of EOL preferences over time and with changes in health status.Evidence reviewWe searched for longitudinal studies of patients' preferences for EOL care in PubMed, EMBASE, and using citation review. Studies restricted to preferences regarding the place of care at the EOL were excluded.FindingsA total of 296 articles were assessed for eligibility, and 59 met inclusion criteria. Twenty-four articles had sufficient data to extract or calculate the percentage of individuals with stable preferences or the percentage of total preferences that were stable over time. In 17 studies (71%) more than 70% of patients' preferences for EOL care were stable over time. Preference stability was generally greater among inpatients and seriously ill outpatients than among older adults without serious illnesses (P < .002). Patients with higher education and who had engaged in advance care planning had greater preference stability, and preferences to forgo therapies were generally more stable than preferences to receive therapies. Among 9 of the 24 studies (38%) assessing changes in health status, no consistent relationship with preference changes was identified.Conclusions and relevanceConsiderable variability among studies in the methods of preference assessment, the time between assessments, and the definitions of stability preclude meta-analytic estimates of the stability of patients' preferences and the factors influencing these preferences. Although more seriously ill patients and those who engage in advance care planning most commonly have stable preferences for future treatments, further research in real-world settings is needed to confirm the utility of advance care plans for future decision making.

Dataset Information

A new measure for end of life planning, preparation, and preferences in Huntington disease: HDQLIFE end of life planning.

Publications

A new measure for end of life planning, preparation, and preferences in Huntington disease: HDQLIFE end of life planning.

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