Sharing is Caring: Minimizing the Disruption with Palliative Care.

There is an upward trend incidence of multiple chronic life-limiting conditions with a well-documented associated impact on patients and their caregivers. When patients approach the end of life, they are often faced with a challenging multidimensional burden while navigating a complex health care system. Patients and families/caregivers are faced with daily decisions, often with little or no frame of reference or medical knowledge. The "what, how, when, and where" puzzle during this challenging time can be overwhelming for patients and their families, and when clinicians do not contemplate this associated workload's impact on patients and caregivers' capacity for self-care, patients and caregivers scramble to find compensatory solutions, often putting their health care at lower priority. This consequently warrants the underlying importance of palliative care and integrating it into the patients' health care plans earlier. There is increasing evidence from recent trials that supported implementing national policies regarding the early integration of palliative care and its role in improving the quality of life, increasing survival, and supporting patients' and caregivers' values when making decisions about their health care while possibly minimizing the burden of illness. The mission of palliative care is to assess, anticipate, and alleviate the challenges and suffering for patients and their caregivers by providing well-constructed approaches to disease-related physical treatments as well as psychological, financial, and spiritual aspects. Communication among all participants (the patient, family/caregivers, and all involved health care professionals) ought to be timely, thorough, and patient-centric. Palliative medicine arguably represents an example of shared decision-making (SDM)-facilitating a patient-centered, informed decision-making through an empathic conversation that is supported by clinicians' expertise and the best available evidence that takes patients values and preferences into consideration. Palliative care teams often consider the burden placed on patients and their caregivers, thus treatment plans would be assessed and introduced into the patients' lives with reflection on the related workload and the potential capacity to take on those plans. Such an approach to pause-and-examine, understand-and-discuss, and assess-and-alleviate might provide a possible example of a health care system that is minimally disruptive to patients and their families. This is an opportunity to replace the information-filled encounter with a more constructive engagement and empowerment to all major stakeholders to participate-an axiom integral to palliative care. Using the best available evidence in caring for patients while enacting SDM, palliative care, primary care, and other subspecialty clinicians need to consider the significant workload and burden that comes with health care and thus explore pathways to minimize the disruption in patients and caregivers' lives. As we collaborate to end cancer and all other mobdeities, we a need a concurrent movement to transform this disease-centered, payer-driven health care era to a rather patient-entered, thoughtful, and minimally disruptive one will benefit patients and physicians alike.

Patient-reported distress and survival among patients receiving definitive radiation therapy.

OBJECTIVE: Patient-reported distress (PRD) has not been well assessed in association with survival after radiation therapy (RT). The aims of this study were to evaluate the association between PRD level and survival after definitive RT and to identify the main causes of distress in definitive RT patients. METHODS AND MATERIALS: A total of 678 consecutive patients receiving definitive RT at our institution from April 2012 through May 2015 were included. All patients answered a PRD questionnaire that contained 30 items related to possible causes of distress, which could be rated from 1 (no distress) to 5 (high distress). Additionally, patients were asked to rate their overall distress level from 0 (no distress) to 10 (extreme distress). This overall distress level was our primary patient-reported distress measure and was examined as a continuous variable and as a categorical variable with 3 PRD levels (low, 0-3 [n = 295]; moderate, 4-6 [n = 222]; and high, 7-10 [n = 161]). RESULTS: As a continuous variable in multivariable Cox regression analysis, a higher overall PRD level was associated with poorer survival after RT (hazard ratio [HR], 1.39; P = .004). As a categorical variable, compared with patients with low distress, survival was poorer for patients with moderate distress (HR, 1.62; P = .038) or high distress (HR, 1.49; P = .12), but the latter difference was not significant. When the moderate and high distress levels were combined, survival was significantly poorer compared with the low distress level (HR, 1.57; P = .034). The top 5 specific causes of distress that patients mentioned were "How I feel during treatment," "Fatigue," "Out-of-pocket medical costs," "Pain that affects my daily functioning," and "Sleep difficulties." CONCLUSIONS: PRD before or during RT is a prognostic factor associated with decreased survival. Distress screening guidelines and interventions should be implemented for patients receiving definitive RT.

Initial Results of a Safety and Feasibility Study of Auditory Brainstem Implantation in Congenitally Deaf Children.

OBJECTIVE: To determine the safety and feasibility of the auditory brainstem implant (ABI) in congenitally deaf children with cochlear aplasia and/or cochlear nerve deficiency. STUDY DESIGN: Phase I feasibility clinical trial of surgery in 10 children, ages 2 to 5 years, over a 3-year period. SETTING: Tertiary children's hospital and university-based pediatric speech/language/hearing center. INTERVENTION(S): ABI implantation and postsurgical programming. MAIN OUTCOME MEASURE(S): The primary outcome measure is the number and type of adverse events during ABI surgery and postsurgical follow-up, including behavioral mapping of the device. The secondary outcome measure is access to and early integration of sound. RESULTS: To date, nine children are enrolled. Five children have successfully undergone ABI surgery and postoperative behavioral programming. Three children were screen failures, and one child is currently undergoing candidacy evaluation. Expected adverse events have been documented in three of the five children who received the ABI. One child experienced a cerebral spinal fluid leak, which resolved with lumbar drainage. One child demonstrated vestibular side effects during device programming, which resolved by deactivating one electrode. One child experienced postoperative vomiting resulting in an abdominal radiograph. Four children have completed their 1-year follow-up and have speech detection thresholds of 30 to 35 dB HL. Scores on the IT-MAIS/MAIS range from 8 to 31 (out of a total of 40), and the children are demonstrating some ability to discriminate between closed-sets words that differ by number of syllables (pattern perception). CONCLUSION: ABI surgery and device activation seem to be safe and feasible in this preliminary cohort.

The development of auditory perception in children after auditory brainstem implantation.

Auditory brainstem implants (ABIs) can provide useful auditory perception and language development in deaf children who are not able to use a cochlear implant (CI). We prospectively followed up a consecutive group of 64 deaf children up to 12 years following ABI surgery. The etiology of deafness in these children was: cochlear nerve aplasia in 49, auditory neuropathy in 1, cochlear malformations in 8, bilateral cochlear postmeningitic ossification in 3, neurofibromatosis type 2 in 2, and bilateral cochlear fractures due to a head injury in 1. Thirty-five children had other congenital nonauditory disabilities. Twenty-two children had previous CIs with no benefit. Fifty-eight children were fitted with the Cochlear 24 ABI device and 6 with the MedEl ABI device, and all children followed the same rehabilitation program. Auditory perceptual abilities were evaluated on the Categories of Auditory Performance (CAP) scale. No child was lost to follow-up, and there were no exclusions from the study. All children showed significant improvement in auditory perception with implant experience. Seven children (11%) were able to achieve the highest score on the CAP test; they were able to converse on the telephone within 3 years of implantation. Twenty children (31.3%) achieved open set speech recognition (CAP score of 5 or greater) and 30 (46.9%) achieved a CAP level of 4 or greater. Of the 29 children without nonauditory disabilities, 18 (62%) achieved a CAP score of 5 or greater with the ABI. All children showed continued improvements in auditory skills over time. The long-term results of ABI surgery reveal significant auditory benefit in most children, and open set auditory recognition in many.

Training mid-level providers on palliative care: bringing advanced directives and symptom assessment and management to community oncology practices.

Palliative care services are not available in most outpatient oncology practices. A program training 11 mid-level providers from oncology practices on advanced directive discussions and supportive symptom assessment and management performed by palliative care specialists was completed. A follow-up session 9 months later identified barriers to implementation. Of the 11 mid-level providers, 8 participated in the follow-up session, and 9 of the 11 providers implemented advanced directive's discussions and symptom assessment and management for patients with metastatic cancer. Main barriers included uncertainties about reimbursement, patients' lack of knowledge about palliative care, and lack of access to supportive services. This program successfully promoted advanced directive discussions and supportive/palliative care symptom assessment and management to community oncology practices, which will hopefully translate into improved quality of life for patients with metastatic cancer.

Auditory brainstem implants for neurofibromatosis type 2.

PURPOSE OF REVIEW: Neurofibromatosis type 2 (NF2) produces benign Schwann cell tumors on many cranial nerves, in particular on the vestibular portions of the VIIIn bilaterally. Removal of these vestibular schwannomas usually severs the auditory portion of the VIIIn, thus deafening the patients. The auditory brainstem implant (ABI) was designed to provide prosthetic electric stimulation of the cochlear nucleus in the brainstem to restore some hearing sensations to patients deafened by bilateral removal of vestibular schwannomas. This study will review the new developments and improving outcomes of the ABI. RECENT FINDINGS: From its initial application in 1979 until about 2005, the ABI provided modest but useful auditory sensations to NF2 patients. However, application of the ABI in non-NF2 populations and in children with congenital malformations demonstrated better results, showing that the ABI could provide high levels of speech recognition. Recent results show excellent speech recognition in NF2 patients as well. This study will discuss the potential causes of the variability in ABI outcomes. SUMMARY: ABIs activate neurons in the cochlear nucleus to recreate hearing sensations in people who have become deaf as a result of the loss of the auditory nerve. Most NF2 patients show functional hearing benefit from the ABI, with awareness and recognition of environmental sounds and enhancement of lipreading. It is now clear that ABIs can produce excellent speech recognition in some patients with NF2, allowing even conversational telephone use. Although the factors leading to this improved performance are not completely clear, these new results show that excellent hearing is possible for NF2 patients with the ABI.

A nurse practitioner directed intervention improves the quality of life of patients with metastatic cancer: results of a randomized pilot study.

BACKGROUND: There is a paucity of randomized studies evaluating the value of palliative interventions on a prospective basis in newly diagnosed oncology patients. We sought to prospectively evaluate quality of life (QoL) outcomes in advanced cancer patients who received discussion-based palliative care interventions from an advanced registered nurse practitioner (ARNP) integrated into the oncology team, and compare these outcomes with a control population. METHODS: Patients with metastatic cancer were randomized to standard care or an ARNP-directed intervention that included discussions of the benefits of hospice, discussions on living wills and advanced directives (Five Wishes document) along with an assessment of QoL. Relevant endpoints included change from baseline QoL and improvement in hospice knowledge. RESULTS: From November 13, 2008, through July 28, 2009, 26 patients were accrued at the Mayo Clinic in Jacksonville, Florida. The study closed early due to published data demonstrating the benefits of early palliative care interventions in the management of metastatic cancer patients. Statistically significant improvements from baseline were noted in emotional and mental QoL assessments in the intervention group that were not seen in the control group. Patients found it useful to have the living will and Five Wishes documents offered as part of the ARNP intervention. CONCLUSIONS: An ARNP-directed intervention that explains the benefits of hospice and addresses advanced directives early in the course of metastatic cancer patients' treatment, is well received by the patients and their relatives and leads to measurable improvement in the patient's emotional and mental QoL.

Histopathological analysis of a 15-year user of an auditory brainstem implant.

Auditory brainstem implants (ABIs) can provide highly beneficial hearing sensations to individuals deafened by bilateral vestibular schwannomas (neurofibromatosis type 2). Relatively little is known about the status of stimulated neurons after long-term ABI use. Direct examination of the cochlear nuclear complex (CN) of one 5-year ABI user indicated no deleterious effect. Recently, we examined the brainstem of a patient who used his ABI daily for 15 years with excellent performance. There was good preservation of CN cell size, morphology, and packing density, a very favorable sign considering that a number of infants are now receiving ABIs.

Estimated net saving to society from cochlear implantation in infants: a preliminary analysis.

OBJECTIVES/HYPOTHESIS: Although it is clear that cochlear implants (CIs) are highly cost-effective in adults and children, the possible additional economic benefit of implantation at younger ages has to be fully established to verify whether the costs and outcomes of CIs differ between infants and older children. STUDY DESIGN: Retrospective cohort study. METHODS: Comprehensive data of CI costs were obtained in four groups of children (age 2-11, 12-23, 24-35, and 72-83 months) from parent questionnaires, national healthcare and educational systems, and retail prices for materials used. Outcomes are compared in terms of receptive language level (Peabody Picture Vocabulary Test-Revised [PPVT-R]), with follow-up to the chronological age of 10 years. RESULTS: Implantation in infants was associated with a lower total cost for the first 10 years of life. The net savings to society ranged from around 21,000€ in the two younger classes to more than 35,000€ when comparing infants against children in the oldest group. When implantation was delayed, family costs played an important role in the increase in expenses. Children in the 2- to 11-month group scored significantly better at the PPVT-R than those in the other age groups (P < .05, P < .01, and P < .001, respectively; Dunn's test) at 10 years of age. The cost per 1-year gain in vocabulary age at the PPVT-R showed a substantial difference between the youngest and oldest age groups (13,266€/year, 17,719€/year, 20,029€/year, and 28,042€/year, respectively). CONCLUSIONS: CIs for patients under 1 year of age afford significantly improved performance and a net savings to society.

Infants versus older children fitted with cochlear implants: performance over 10 years.

OBJECTIVES: To investigate the efficacy of cochlear implants (CIs) in infants versus children operated at later age in term of spoken language skills and cognitive performances. METHOD: The present prospective cohort study focuses on 19 children fitted with CIs between 2 and 11 months (X=6.4 months; SD=2.8 months). The results were compared with two groups of children implanted at 12-23 and 24-35 months. Auditory abilities were evaluated up to 10 years of CI use with: Category of Auditory Performance (CAP); Infant-Toddler Meaningful Auditory Integration Scale (IT-MAIS); Peabody Picture Vocabulary Test (PPVT-R); Test of Reception of Grammar (TROG) and Speech Intelligibility Rating (SIR). Cognitive evaluation was performed using selected subclasses from the Griffiths Mental Development Scale (GMDS, 0-8 years of age) and Leiter International Performance Scale-Revised (LIPS-R, 8-13 years of age). RESULTS: The infant group showed significantly better results at the CAP than the older children from 12 months to 36 months after surgery (p<.05). Infants PPVT-R outcomes did not differ significantly from normal hearing children, whereas the older age groups never reached the values of normal hearing peers even after 10 years of CI use. TROG outcomes showed that infants developed significantly better grammar skills at 5 and 10 years of follow up (p<.001). Scores for the more complex subtests of the GMDS and LIPS-R were significantly higher in youngest age group (p<.05). CONCLUSION: This study demonstrates improved auditory, speech language and cognitive performances in children implanted below 12 months of age compared to children implanted later.

A preliminary study comparing attitudes toward hospice referral between African American and white American primary care physicians.

UNLABELLED: End-of-life (EOL) decision making is an integral component of high-quality health care. Factors influencing individual primary care physicians (PCPs) can affect their perspectives and referral preferences for EOL care. Numerous barriers have been cited, including patient and family readiness, physicians' comfort with discussing death, and the pursuit of a cure. This study explores another barrier by examining physician ethnicity and comparing the attitudes toward hospice referral between African American and white American primary care providers (PCPs). Training PCPs to efficiently transition from a curative model of care to a palliative model of care has the potential to increase the level of appropriate EOL care, increase hospice referral, and enhance patient and provider satisfaction; it is also fiscally prudent. This preliminary study aims to compare attitudes toward hospice referral and physicians' personal experiences with hospice between African American and white American PCPs. METHODS: The survey tool was developed by PCPs at the Mayo Clinic Florida after a full literature review and consultation with hospice physicians, oncology specialists, and primary care colleagues from the residency programs at Mayo Minnesota and Mayo Arizona, with input from the Mayo Survey Office, and distributed to all physicians and residents in the departments of Family Medicine at via Mayo's intranet; Mayo's Midwest Regional Practices (245 physicians) received the survey via standard mail. The survey consisted of 17 questions regarding attitudes toward hospice referral and the one question regarding physicians' personal experience with hospice. The final sample size consisted of 167 white American physicians and 46 African American physicians. Responses were compared using a Wilcoxon rank sum test. P values ≤ 0.05 were considered statistically significant. All statistical analyses were performed using the SAS software package (SAS Institute, Cary, North Carolina). RESULTS: The distributions of physician age, specialty, board certification, and years practicing medicine were similar between African American and white American physicians, while male gender was more common in white American physicians than African American physicians. Statistically significant differences in attitudes toward hospice between African American and white American physicians were observed for five of the 17 survey questions. There was a dramatic difference in the distribution of patient race between African American and white American physicians, raising the possibility that any differences between white American and African American physicians could be attributed to patient race, rather than physician race. Due to survey limits, larger studies involving more African American physicians are needed to address this topic. CONCLUSION: The results of our preliminary study suggest that certain attitudes toward hospice referral may differ between African American and white American PCPs. If validated, further insight into this issue could lead to educational programs for PCPs that correct misperceptions.

Complications in auditory brainstem implant surgery in adults and children.

OBJECTIVE: Surgery for hearing restoration with auditory brainstem implantation (ABI) in patients with neurofibromatosis type 2 (NF2) is considered safe, as no increase in postoperative complications related to surgery or device implantation has been observed. Over the last 10 years, we have extended the use of ABI to nontumor (NT) adults and children with cochlear or cochlear nerve malfunctions who would not or did not benefit from a cochlear implant (CI). This article examines the complications encountered in ABI surgery in all patient groups. STUDY DESIGN: Retrospective case review. SETTING: Tertiary referral center. PATIENTS: : One hundred fourteen ABI operations were performed in Verona (Italy) from 1997 to 2008 in 83 adults and 31 children. Thirty-six had NF2 (34 adults and 2 children), and 78 (49 adults and 29 children) had NT cochlear and cochlear nerve disorders. INTERVENTION: A retrosigmoid-transmeatal approach was used in the NF2 cases, and a simple retrosigmoid approach was used in the NT patients. MAIN OUTCOME MEASURES: Surgical complications are tabulated according to standard reporting categories and are presented separately and analyzed statistically for NF2, NT adults, and NT children. Complication rates are compared with those of CI and microvascular decompression surgery. RESULTS: ABI surgery has a very low major complication rate, particularly in non-NF2 patients. Minor complications were easily controlled with complete resolution in all cases. Although the potential complications of intradural ABI implantation are more severe than those of a transmastoid approach for CIs, the actual observed complication rates in ABI candidates without NF2 tumors are comparable to those of CI surgery in both adults and children. CONCLUSION: This study demonstrates that the ABI is a safe procedure when performed by an experienced surgical and rehabilitation team, and its benefits can be extended to a larger population of deaf patients.

Large coronal shear fractures of the capitellum and trochlea treated with headless compression screws.

BACKGROUND: The purpose of this study is to retrospectively evaluate the clinical outcomes of 18 patients with large coronal shear fractures of the capitellum and lateral trochlea that underwent open reduction and internal fixation with headless compression screws. METHODS: Eighteen patients were identified (16 women, 2 men) with an average age of 45 years and an average follow-up of 26 months. Fractures were classified according to the Dubberley classification as 11 type-1A injuries and 7 type-2A injuries. RESULTS: All patients, with the exception of 1, had good to excellent functional results by the Broberg-Morrey scale (mean score, 93.3). Average arc of motion was 128 degrees in flexion/extension and 176 degrees in pronation/supination. Radiographically, 3 patients had subsequent development of avascular necrosis and 5 developed arthrosis. No significant negative correlation was noted between the development of avascular necrosis and clinical outcome. Minor complications occurred in 2 patients, but there were no re-operations. CONCLUSION: Headless compression screw fixation allows for stable fixation in patients with large coronal shear fractures of the distal humerus without posterior comminution. LEVEL OF EVIDENCE: 4.

Outcomes in nontumor adults fitted with the auditory brainstem implant: 10 years' experience.

OBJECTIVES: Recently, open-set speech recognition performance has been observed with electric stimulation of the brainstem in some nontumor (NT) patients. These outcomes require that we reevaluate the criteria for patient selection and the rationale for expanding the application for the auditory brainstem implant (ABI) to NT adult patients with profound hearing loss. This study presents results from up to 10 years in adults, with analysis based on cause. MATERIALS AND METHODS: In our Department, from April 1997 to September 2007, ABIs have been implanted in 112 patients (83 adults and 29 children) with tumor (T) and NT disorders. Of the 112 patients, 15 have previously had a cochlear implant elsewhere with no sound detection. This article presents speech recognition results from the 80 patients (32 neurofibromatosis type 2 and 48 NT) who had achieved at least 1-year follow-up. The retrosigmoid approach was used in all NT patients, and the retrosigmoid-transmeatal approach was used in all T patients. RESULTS: All patients had a functioning implantation, and no complications were observed during the operation, activation, or long-term use of the ABI. At the most recent follow-up, NT adults scored from 10 to 100% in open-set speech perception tests (average, 59%), and T patients scored from 5 to 31% (average, 10%). The differences between these results are statistically significant (p = 0.0007). The best performance was observed in patients who lost their nerve VIII from head trauma or severe ossification. Lowest performance (although still highly beneficial to the patient) was observed in patients with neurologic disorders, neuropathy, and cochlear malformations. CONCLUSION: Our experience clearly indicates that the ABI is an effective tool for hearing rehabilitation in patients with profound hearing loss who cannot be fitted with cochlear implants.

Imaging in 28 children with cochlear nerve aplasia.

CONCLUSION: Preoperative CT and MRI assessment of children with severe or profound sensorineural hearing loss (SNHL) is critical for determining implant candidacy. OBJECTIVES: There are a significant number of children who do not show any auditory development with a cochlear implant (CI), possibly due to cochlear nerve (CN) aplasia/hypoplasia. Regardless of the suspected etiology, if a CI is not providing auditory development the clinician should carefully evaluate the possibility of a CN malformation and re-evaluate the child with detailed neuroimaging studies. If the imaging evaluation shows severe cochlear malformation or CN aplasia there is some developmental urgency to consider auditory brainstem implant (ABI) surgery. SUBJECTS AND METHODS: Twenty-eight children affected by congenital SNHL were examined by CT and MRI. Evaluation of the cerebellopontine angle (CPA), internal auditory canal (IAC), cranial nerves, and membranous labyrinth was performed. Six children had been previously fitted elsewhere with a CI with no sound detection. RESULTS: Suspected congenital anomalies were confirmed by CT and MRI in all 28 children: 16 with associated labyrinthine malformations; 1 with outer, middle, and inner ear malformations; and 2 with associated monolateral facial nerve aplasia.