Factors Associated With the Use of U.S. Community–Based Palliative Care for Children With Life-Limiting or Life-Threatening Illnesses and Their Families: An Integrative Review

Context

As children with life-limiting illnesses (LLIs) and life-threatening illnesses (LTIs) live longer, challenges to meeting their complex health care needs arise in homes and communities, as well as in hospitals. Integrated knowledge regarding community-based pediatric palliative care (CBPPC) is needed to strategically plan for a seamless continuum of care for children and their families.

Assessing the Quality of Care for Dying Patients From the Bereaved Relatives' Perspective: Further Validation of “Evaluating Care and Health Outcomes–for the Dying”

ContextEvaluating Care and Health Outcomes–for the Dying (ECHO-D) is a post-bereavement questionnaire that assesses quality of care for the dying and is linked with the Liverpool Care Pathway for the Dying Patient (LCP).ObjectivesTo further assess the validity and reliability of the ECHO-D, namely the construct validity, internal consistency, and test-retest reliability of key composite scales.MethodsSelf-completion questionnaires were mailed to 778 next-of-kin of consecutive deceased patients who had died an “expected” cancer death in a hospice or acute tertiary hospital. For those willing to complete ECHO-D for a second time, another copy was sent a month later. Maximum likelihood factor analysis and Cronbach's alpha test were conducted for four key composite scales. Test-retest reliability was assessed using percentage agreement, Kappa statistic, and Spearman's correlation coefficient (ordinal data). Comparisons between hospice and hospital groups were conducted using one-way between-groups analysis of variance.ResultsFollowing exclusions (n = 52), 255 of 726 next-of-kin agreed to participate (35.2% response rate). Maximum likelihood factor analysis showed a single factor for three of the scales, and all had good internal consistency (Cronbach's alpha >0.78). Barring two questions, all showed good or moderate stability over time. Overall, hospice participants reported the best quality of care, and hospital participants, where care was not supported by the LCP, reported the worst quality of care.ConclusionThese findings support ECHO-D as a valid and reliable instrument to assess quality of care for the dying and assess the effectiveness of interventions such as the LCP.     

End-of-Life Care in Italian Hospitals: Quality of and Satisfaction With Care From the Caregivers' Point of View—Results from the Italian Survey of the Dying of Cancer

ContextA number of studies have highlighted the poor quality of end-of-life (EOL) care provided in hospital settings, leading to a reduction in the quality of EOL care and increase in patient and caregiver dissatisfaction levels.ObjectivesThe aims of this study were the evaluation of the prevalence of major symptoms, treatment, outcomes, information, and care provided to dying cancer patients in Italian hospitals; and an analysis of clinical and socio-demographic factors associated with caregiver satisfaction with the health care provided.MethodsThis is a mortality follow-back survey of 2,000 cancer deaths representative of the country. Caregivers were interviewed about patients' experiences by using a tailored version of the View of Informal Carers—Evaluation of Services questionnaire.ResultsValid interviews were obtained for 84% (n = 364) of the cancer patients who died in hospital. Most Italian cancer patients dying in hospital suffered from a number of untreated or poorly treated symptoms, and only a few reported an acceptable control over physical suffering. Moreover, only two-thirds of patients and one-third of caregivers received basic information on therapies and care. About one-third of the caregivers expressed dissatisfaction with the health care received. The probability of being satisfied was more likely for caregivers of patients living in the north of Italy; caregivers of patients who had not experienced or were only slightly distressed by fatigue; and caregivers who were generally satisfied with hospital facilities and when the health care professionals had provided appropriate information to both patients and caregivers.ConclusionThis study revealed poor quality of EOL care in Italian hospitals, with almost one-third of the caregivers expressing their clear dissatisfaction. A national policy is, therefore, urgently called for to improve the quality of EOL care in Italian hospitals.     

Temporal Trends Between 2010 and 2015 in Intensity of Care at End-of-Life for Patients With Chronic Illness: Influence of Age Under vs. Over 65 Years

Context

Recent analyses of Medicare data show decreases over time in intensity of end-of-life care. Few studies exist regarding trends in intensity of end-of-life care for those under 65 years of age.

Heterogeneity of Patients With Latent Autoimmune Diabetes in Adults: Linkage to Autoimmunity Is Apparent Only in Those With Perceived Need for Insulin Treatment: Results from the Nord-Tr?ndelag Health (HUNT) study

OBJECTIVE—Subjects with the diagnosis of latent autoimmune diabetes in adults (LADA) are more prone to need insulin treatment than those with type 2 diabetes. However, not all patients with LADA develop the need for insulin treatment, indicating the heterogeneity of LADA. We investigated this heterogeneity by comparing phenotypes of LADA with and without perceived need for insulin treatment (data obtained at times when diagnosis of LADA was not investigated) and also compared LADA and type 2 diabetes phenotypes.RESEARCH DESIGN AND METHODS—We used data from the all population–based Nord-Trøndelag Health study (n = 64,931), performed in 1995–1997. Data were assembled for individuals with LADA (n = 106) and type 2 diabetes (n = 943).RESULTS—In the comparison of individuals with LADA both with and without the need for insulin, insulin-treated subjects had higher titers of GAD antibodies (P < 0.001) and lower fasting C-peptide levels (P < 0.001). GAD antibodies and C-peptide correlated negatively (r = −0.40; P = 0.009). In the comparison of individuals with LADA and type 2 diabetes, all without the need for insulin, markers of metabolic syndrome were equally prevalent and pronounced. Age, C-peptide, and glucose levels were also similar. In the comparison of insulin-treated individuals with LADA and type 2 diabetes, more patients with LADA received insulin (40 vs. 22%, P < 0.001) and C-peptide levels were lower (P < 0.001). Patients with LADA were leaner but were still overweight (mean BMI 28.7 vs. 30.9 kg/m² in type 2 diabetes, P < 0.001). In the comparison of type 2 diabetic patients with and without insulin, insulin-treated subjects were more obese and had higher A1C and lower C-peptide levels (P < 0.001).CONCLUSIONS—Our conclusions are that 1) the need for insulin treatment in LADA is linked to the degree of autoimmunity and β-cell failure, 2) subjects with LADA and type 2 diabetes without the need for insulin treatment are phenotypically similar, and 3) insulin treatment in type 2 diabetic patients is associated with both insulin resistance and β-cell insufficiency.Autoimmunity is the major cause of type 1 diabetes. Autoimmunity is also assumed to be the major cause of latent autoimmune diabetes in adults (LADA) because this category of diabetes shares biochemical markers of β-cell–directed autoimmunity with “classic” type 1 diabetes. In clinical practice, autoimmunity in classic type 1 diabetes as well as in LADA is usually documented by antibodies against GAD.LADA is considered a “mild” form of type 1 diabetes. Mild indicates the fact that patients with LADA do not by clinical judgment need insulin from the time of diagnosis. However, within the first few years after the diagnosis of diabetes a need for insulin treatment develops in many patients with LADA. This distinguishes patients with LADA from those with nonautoimmune type 2 diabetes in whom a need for insulin treatment develops later than in those with LADA (1). An early need for insulin treatment in patients with LADA points to ongoing autoimmune-mediated destruction of β-cells in these patients.Risk factors for type 2 diabetes, such as age, obesity, and lack of physical activity, are associated with the development of LADA (2). In fact, odds ratios in terms of risk for diabetes for these factors of insulin resistance were the same for LADA and type 2 diabetes. This raises the question of the relative importance of autoimmunity vis-à-vis insulin resistance for the etiology of LADA and whether etiology differs among patients with LADA. Support for etiological heterogeneity comes from the large UK Prospective Diabetes Study (UKPDS), in which only a minority of patients with the diagnosis of LADA, when defined solely as GAD antibody positivity, developed the need for insulin treatment during 6 years of follow-up (1). The heterogeneity of LADA is also evident when one compares phenotypes of patients with LADA in different studies (3–6).Heterogeneity of patients with LADA could be further elucidated by comparing phenotypes of insulin-treated patients with LADA with those not treated with insulin. However, several conditions have to be met for such comparisons to be valid. First, groups of diabetic subjects to be compared must be drawn from the same geographically defined population. A population-based study is necessary to avoid the possible biases incurred by studying referral patients or patients selected for inclusion in clinical intervention studies. Second, the perceived need for insulin treatment has to be unbiased by LADA classification, because it has been shown that insulin treatment is initiated earlier when prior knowledge of autoimmunity, measured as GAD antibodies, is available (7). Third, valid comparison groups of insulin-treated and non–insulin-treated type 2 diabetic patients from the same population must be at hand.We had the opportunity to study patients with LADA and type 2 diabetes fulfilling the above-mentioned conditions, who were identified and characterized in the Nord-Trøndelag (HUNT) study. The HUNT study was performed between 1995 and 1997. The study was open to all adult subjects (∼90,000) living in a geographically defined area and had a high attendance rate (70%). To our knowledge, the patients with LADA and type 2 diabetes defined in the HUNT study did not participate in any study at the time of diagnosis and initiation of treatment, thereby minimizing any deviation from standard clinical practice and obviating increased attentiveness for signs of insufficient metabolic control and insulin requirement. Further, autoantibodies, such as GAD antibodies, were not measured by doctors (general practitioners) responsible for treatment in the region as part of the diabetes workup before and at the time of assembling data in 1995–1997. Thus, patients with autoimmune diabetes not requiring insulin at time of diagnosis were regarded and treated as type 2 diabetic patients. This assumption provided a unique opportunity to use the need for insulin as clinically perceived as a parameter for subclassifying patients with LADA and to compare phenotypes of insulin-treated and non–insulin-treated patients with LADA with respective groups of type 2 diabetic patients. Specifically, we wished to assess the influence of autoimmunity and β-cell insufficiency vis-à-vis insulin resistance factors for the perceived need for insulin treatment in patients with LADA.     

Does Health-Related Quality of Life Improve for Advanced Pancreatic Cancer Patients Who Respond to Gemcitabine? Analysis of a Randomized Phase III Trial of the Cancer and Leukemia Group B (CALGB 80303)

ContextGemcitabine for advanced pancreatic cancer (APC) is palliative and the prognosis is poor, making health-related quality of life (HRQOL) particularly important.ObjectivesWe evaluated HRQOL with the EuroQol (EQ-5D?) in patients with APC participating in Cancer and Leukemia Group B 80303, a multicenter, double-blind, randomized trial comparing overall survival (OS) between two treatment arms: gemcitabine with bevacizumab or gemcitabine with placebo.MethodsA consecutive subsample of patients was invited to complete the EQ-5D surveys. Because neither clinical nor HRQOL outcomes differed based on the study arm, analyses were pooled. Changes in mean scores from baseline to eight weeks and the prognostic value of the EQ-5D were evaluated.ResultsMean index scores remained stable (0.78 at baseline [n = 267], 0.79 at eight weeks [n = 186], P = 0.34, Wilcoxon signed rank test), attributable to a modest deterioration of physical function domain scores coincident with small improvements in pain and anxiety/depression scores. A small decline in visual analogue scale scores was observed (70.7 vs. 68.2, P = 0.026). HRQOL changes within chemotherapy response strata revealed stable index scores but a trend of worsened physical function among patients with disease progression compared with those with stable or improved disease. Visual analogue scale scores trended downward over time irrespective of chemotherapy response status, with a statistically meaningful deterioration in patients who progressed (68.9 vs. 64.4, P = 0.029). Baseline scores from both EQ-5D scales were significant predictors of OS in Cox proportional hazard models.ConclusionResponse to gemcitabine treatment in APC is not associated with appreciable improvement of global HRQOL. Small improvements in pain and mood are observed despite progressive functional decline. Those who respond to gemcitabine may experience a slight slowing of functional deterioration.     

“They Need to Have an Understanding of Why They're Coming Here and What the Outcomes Might Be.” Clinician Perspectives on Goals of Care for Patients Discharged From Hospitals to Skilled Nursing Facilities

Context

The number of patients discharged from acute care hospitals to skilled nursing facilities (SNFs) is rising. These patients have increasingly complex needs and many experience poor outcomes while under SNF care, including hospital readmissions. Patients' goals of care (GoC) are viewed as a factor contributing to unplanned hospital readmissions from SNFs. However, clinicians' perspectives of GoC for hospitalized patients discharged to SNFs are not well-described.