Quality of life in chordoma survivors: results from the Chordoma Foundation Survivorship Survey.

OBJECTIVE: Chordomas are rare malignant bone tumors whose location in the skull base or spine, invasive surgical treatment, and accompanying adjuvant radiotherapy may all lead patients to experience poor quality of life (QOL). Limited research has been conducted on specific demographic and clinical factors associated with decreased QOL in chordoma survivors. Thus, the aim of the present study was to investigate several potential variables and their impact on specific QOL domains in these patients as well the frequencies of specific QOL challenges within these domains. METHODS: The Chordoma Foundation (CF) Survivorship Survey was electronically distributed to chordoma survivors subscribed to the CF Chordoma Connections forum. Survey questions assessed QOL in three domains: physical, emotional/cognitive, and social. The degree of impairment was assessed by grouping the participants into high- and low-challenge groups designated by having ≥ 5 or < 5 symptoms or challenges within a given QOL domain. Bivariate analysis of demographic and clinical characteristics between these groups was conducted using Fisher's exact test and the Mann-Whitney U-test. RESULTS: A total of 665 chordoma survivors at least partially completed the survey. On bivariate analysis, female sex was significantly associated with increased odds of significant emotional (p = 0.001) and social (p = 0.019) QOL burden. Younger survivors (age < 65 years) were significantly more likely to experience significant physical (p < 0.0001), emotional (p < 0.0001), and social (p < 0.0001) QOL burden. Skull base chordoma survivors had significantly higher emotional/cognitive QOL burden than spinal chordoma survivors (p = 0.022), while the converse was true for social QOL challenges (p = 0.0048). Survivors currently in treatment were significantly more likely to experience significant physical QOL challenges compared with survivors who completed their treatment > 10 years ago (p = 0.0074). Fear of cancer recurrence (FCR) was the most commonly reported emotional/cognitive QOL challenge (49.6%). Only 41% of the participants reported having their needs met for their physical QOL challenges as well as 25% for emotional/cognitive and 18% for social. CONCLUSIONS: The authors' findings suggest that younger survivors, female survivors, and survivors currently undergoing treatment for chordoma are at high risk for adverse QOL outcomes. Additionally, although nearly half of the participants reported a FCR, very few reported having adequate emotional/cognitive care. These findings may be useful in identifying specific groups of chordoma survivors vulnerable to QOL challenges and bring to light the need to expand care to meet the QOL needs for these patients.

Medical and Cardiac Risk Stratification and Exercise Prescription in Persons With Cancer.

ABSTRACT: Cancer patients are recommended to exercise at all stages of disease given the multiple health and functional benefits of physical activity. Certain safety precautions, including a preparticipation medical evaluation and periodic re-evaluations, should be undertaken before creating an exercise program based on individual cancer and treatment history. When designing an exercise program, physiatrists should use similar principles of frequency, intensity, timing, and type for cancer patients that are used for noncancer patients. Special attention to risks of cardiac and pulmonary disease along with risks of sarcopenia, thrombocytopenia, anemia, neutropenia, fracture risk, neurotoxicity, lymphedema, and metastases should be made. This article will outline these specific risks and necessary modifications to the exercise prescription for cancer patients that can be used to enable safe participation in recommended exercise.

Strategies to improve the experience of patients with brain tumors in the inpatient rehabilitation setting: development of a care coordination checklist.

PURPOSE: To develop a checklist to facilitate coordination of care and communication of patients with brain tumors and assess the benefit of the checklist using a quality improvement survey. MATERIALS AND METHODS: Rehabilitation teams are challenged to respond to the unique needs of patients with brain tumors as this population requires coordinated care across multiple disciplines with frequent communication. To improve care of this patient population in an IRF setting, we developed a novel checklist using a multidisciplinary team of clinicians. Our checklist aims to improve communication between multiple treatment teams, achieve appropriate goals during the IRF stay, involve services as needed and arrange post-discharge services for patients with brain tumors. We then used a quality improvement survey among clinicians to assess the efficacy and general opinion of the checklist. RESULTS: A total of 15 clinicians completed the survey. 66.7% felt that the checklist improved care delivery, and 66.7% felt the checklist improved communication between providers internally and with external institutions. More than half felt the checklist improved the patient experience and care delivery. CONCLUSIONS: A care coordination checklist has the potential to address the unique challenges experienced by patients with brain tumors to improve overall care for this population.IMPLICATIONS FOR REHABILITATIONSuccessful clinical care and rehabilitation of patients with brain tumors requires the coordinated efforts of an interdisciplinary team that often spans multiple care settings.A care coordination checklist has the potential to address the unique challenges experienced by patients with brain tumors to improve overall care for this population in the inpatient rehabilitation setting.

Quality of Life in Chordoma Co-Survivors: Results from the Chordoma Foundation Survivorship Survey.

BACKGROUND: Chordomas are a rare form of aggressive bone cancer and are associated with poor quality of life (QOL). The present study sought to characterize demographic and clinical characteristics associated with QOL in chordoma co-survivors (caregivers of patients with chordoma) and assess whether co-survivors access care for QOL challenges. METHODS: The Chordoma Foundation Survivorship Survey was electronically distributed to chordoma co-survivors. Survey questions assessed emotional/cognitive and social QOL, with significant QOL challenges being defined as experiencing ≥5 challenges within either of these domains. The Fisher exact test and Mann-Whitney U test were used to analyze bivariate associations between patient/caretaker characteristics and QOL challenges. RESULTS: Among the 229 respondents to our survey, nearly half (48.5%) reported a high number (≥5) of emotional/cognitive QOL challenges. Co-survivors younger than 65 years were significantly more likely to experience a high number of emotional/cognitive QOL challenges (P < 0.0001), whereas co-survivors >10 years past the end of treatment were significantly less likely to experience a high number of emotional/cognitive QOL challenges (P = 0.012). When asked about access to resources, a lack of knowledge of resources to address their emotional/cognitive and social QOL issues (34% and 35%, respectively) was the most common response. CONCLUSIONS: Our findings suggest that younger co-survivors are at high risk for adverse emotional QOL outcomes. In addition, more than one third of co-survivors did not know about resources to address their QOL issues. Our study may help guide organizational efforts to provide care and support to patients with chordoma and their loved ones.

Predictors of Acute Transfer and Mortality Within 6 Months From Admission to an Inpatient Rehabilitation Facility for Patients With Brain Tumors.

OBJECTIVE: To obtain useful information for clinicians in evaluating patients with brain tumors for transfer to and subsequent care in inpatient rehabilitation facilities (IRFs). DESIGN: Retrospective chart review. SETTING: Inpatient rehabilitation facility. PARTICIPANTS: A total of 208 adults with either initial or recurrent brain tumors who were admitted to an IRF between January 2017 and December 2018 after an acute hospitalization. INTERVENTIONS: None MAIN OUTCOME MEASURES: Transfer from an IRF to an acute care hospital and mortality within 6 months from admission to an IRF. RESULTS: Of the 208 patients who met inclusion criteria, 20.2% were transferred to an acute care hospital during the IRF stay, which was associated with prior chemotherapy, steroid use, and laterality of tumor. In total, 36.9% of patients with brain tumors died within 6 months of an IRF admission that was associated with recurrent tumor diagnosis, prior chemotherapy, prior neurosurgical intervention, prior neurostimulant use, use of steroids, isocitrate dehydrogenase and O6-methyl-guanyl-methyl-transferase biomarkers, and laterality and location of tumor. CONCLUSIONS: Patients with brain tumors have a notable potential for acute hospital transfer and mortality within 6 months of IRF stay, with several tumor- and treatment-related risk factors. This information can help identify functional goals, identify high risk patients, enable closer clinical monitoring, and facilitate focused care discussions at IRFs.

A Comparison of Functional Outcomes between Patients Admitted to Inpatient Rehabilitation after Initial Diagnosis Versus Recurrence of Glioblastoma Multiforme.

BACKGROUND: Prior studies of inpatient rehabilitation of patients with brain tumor demonstrate similar functional gains as compared to other rehabilitation populations. There are few studies specifically examining the rehabilitation of patients with glioblastoma. OBJECTIVE: To compare functional outcomes between matched patients admitted to acute inpatient rehabilitation after initial diagnosis of glioblastoma (iGBM) and after diagnosis of recurrent glioblastoma (rGBM). DESIGN: A retrospective, case-matched study using descriptive statistics compared demographic information and functional outcomes as designated by the Functional Independence Measure (FIM) score. SETTING: A single, freestanding inpatient rehabilitation hospital. PATIENTS: Over a 20-month period, 25 patients with iGBM were matched with 25 patients admitted to an inpatient rehabilitation facility with rGBM by the following criteria: (1) side of lesion (left/right hemisphere), (2) admission total FIM score within 10 points, (3) age within 10 years, and (4) gender. Nineteen of the 25 patients in each group were matched meeting all criteria, and 6 of the 25 patients were matched meeting three out of four criteria. INTERVENTIONS: Not applicable. MAIN OUTCOME MEASURE: The primary outcome measures were differences in functional outcomes as measured by FIM scores. RESULTS: There were no statistically significant differences (P < .05) between the groups in mean admission FIM scores, discharge FIM scores, FIM gains, and FIM efficiencies. There were no statistically significant differences in the development of complications during acute rehabilitation and transfer rate to acute care hospital. Sixty-four percent of patients in both groups were able to be discharged home. CONCLUSIONS: This study demonstrated no statistically significant differences in functional outcomes between matched patients admitted with iGBM compared to rGBM. Further studies are indicated to examine the rehabilitation outcomes of patients with rGBM in inpatient rehabilitation.

Moving forward on all fronts: impact, patterns, and barriers to exercise in cancer survivors and patients living with advanced disease.

INTRODUCTION: Exercise is recommended for all patients with cancer, but there has been limited study of exercise habits in patients across the spectrum of illness. PURPOSE: This pragmatic survey aimed to identify the unmet supportive care needs, self-reported symptoms, and exercise habits among both cancer survivors and patients living with advanced disease to determine adherence to exercise guidelines and to identify barriers and opportunities to improve exercise. METHODS: An anonymous cross-sectional self-administered paper survey was distributed to patients with cancer presenting for oncology clinic visits at an academic cancer center. Survey measures included presence of symptoms and health problems in addition to weekly time spent exercising, change in exercise levels since diagnosis, interest in exercise, and self-reported barriers. Participants reporting at least 150 min of exercise per week were characterized as adherent to guidelines. RESULTS: Among 640 survey respondents, 570 (89%) completed questions about exercise. Only 44% of cancer survivors and 34% of patients living with advanced disease met current guidelines. Survivors who met exercise guidelines had a lower prevalence of fatigue and memory impairments, but this finding was not seen among patients with advanced cancer. Over 70% of patients with advanced disease and 47% of survivors reported decreasing exercise post-diagnosis compared to pre-diagnosis. Prominent barriers to exercise among both groups included burden of illness and time constraints but interest in increasing exercise was high. CONCLUSIONS: There is an opportunity to improve exercise and related outcomes among a large percentage of both cancer survivors and patients living with advanced disease.

Outcome Trends of Adult Cancer Patients Receiving Inpatient Rehabilitation: A 13-Year Review.

OBJECTIVE: This study describes characteristics and trends of inpatient rehabilitation among cancer patients within the United States over a 13-yr period. DESIGN: This was a retrospective study of data from the Uniform Data System for Medical Rehabilitation from 2002 to 2014. Patients older than 17 yrs admitted to inpatient rehabilitation facilities with a diagnosis of malignant cancer were included. Trends of rehabilitation outcomes including length of stay, Functional Independence Measure (FIM) Instrument scores, and discharge location were examined. RESULTS: Data from 115,570 cancer patients were evaluated. Mean age was 66 ± 14 yrs and 49% were women. Mean length of stay decreased over time (2002: 14 days to 2014: 13 days; P < 0.0005). Patient's admission total FIM scores decreased over time (2002: 68 ± 18 to 2014: 61 ± 16; P < 0.0005). The FIM change score increased over time (2002: 19 ± 16 to 2014: 25 ± 17; P < 0.0005). The greatest significant functional gains occurred in self care and transfers. Most patients (>70%) were discharged to the community. CONCLUSIONS: Cancer patients receiving acute inpatient rehabilitation demonstrated significant improvements in functional outcomes from admission to discharge. Cancer patients became more independent in important activities of daily living, thereby potentially reducing caregiver burden and ensuring safer discharges back to the community. This study suggests potential benefit of inpatient rehabilitation for appropriate cancer patients.

Variables affecting functional improvement in chordoma patients admitted to an inpatient rehabilitation facility: A retrospective review.

STUDY DESIGN: Retrospective chart review of patients after surgical resection of chordoma admitted to an inpatient rehabilitation facility. OBJECTIVE: To evaluate the characteristics associated with improving two or more functional levels and therefore classifying as a substantial responder after an inpatient rehabilitation facility stay in post-resection chordoma patients. SETTING: Acute inpatient rehabilitation facility in the United States. METHODS: A total of 40 patients were admitted to an inpatient rehabilitation facility from 2010-2015 after chordoma resection. Demographics, tumor management information, lengths of stay and functional independence measures on admission and discharge were collected. Substantial responders were identified as individuals who improved two or more functional levels based on total FIM score change. Logistic regression was used to analyze the available data for association of quantitative and categorical variables with being a substantial responder. RESULTS: The categorical variables analyzed in this study (sex, readmission to an acute hospital, Charlson Comorbidity Index, tumor level, nerve sacrifice, recurrent tumor and metatases) were not associated with being a substantial responder. The quantitative variables age and length of stay at the inpatient rehabilitation facility were individually associated with being a substantial responder, while length of stay at the acute hospital was not. CONCLUSIONS: Patients who were younger were more likely to be classified as substantial responders. Patients with longer lengths of stay at the inpatient rehabilitation facility were also more likely to be classified as substantial responders.

Most National Cancer Institute-Designated Cancer Center Websites Do Not Provide Survivors with Information About Cancer Rehabilitation Services.

This study is the first to evaluate the existence and quality of patient-related cancer rehabilitation content on the websites of National Cancer Institute (NCI)-Designated Cancer Centers. In 2016, a team of cancer rehabilitation physicians (physiatrists) conducted an analysis of the patient-related rehabilitation content on the websites of all NCI-Designated Cancer Centers that provide clinical care (N = 62 of 69). The main outcome measures included qualitative rating of the ease of locating descriptions of cancer rehabilitation services on each website, followed by quantitative rating of the quality of the cancer rehabilitation descriptions found. More than 90% of NCI-Designated Cancer Centers providing clinical care did not have an easily identifiable patient-focused description of or link to cancer rehabilitation services on their website. Use of a website's search box and predetermined terms yielded an additional 13 descriptions (21%). Therefore, designers of nearly 70% of the websites evaluated overlooked an opportunity to present a description of cancer rehabilitation services. Moreover, only 8% of the websites included accurate and detailed information that referenced four core rehabilitation services (physiatry and physical, occupational and speech therapy). Further research is needed to confirm the presence of cancer rehabilitation services and evaluate access to these types of services at NCI-Designated Cancer Centers providing clinical care.

Characteristics and functional outcomes of chordoma patients admitted for inpatient rehabilitation.

PURPOSE: To describe the population and functional changes observed after an inpatient rehabilitation facility stay in chordoma patients Materials and Methods: We conducted a consecutive series retrospective review of patients with chordoma, admitted to an academic inpatient rehabilitation facility after surgical resection from 2010 to 2015. Information regarding demographic, tumor- and surgery-specific data, lengths of stay, complications, admission and discharge functional independence measure scores was collected. RESULTS: A total of 40 patients with a diagnosis of chordoma were admitted to an inpatient rehabilitation facility postoperatively were included for analysis. Thirty-three patients had initial resection of chordoma, seven patients had resection of recurrent chordoma, and eight patients had metastatic disease on admission to an inpatient rehabilitation facility. The average change in total and motor functional independence measure scores after an inpatient rehabilitation facility stay was 33.7 and 26.1, respectively. The acute hospital transfer rate was 32.5% and the postoperative complication rate was 62.5%. CONCLUSIONS: This study is the first to describe the population and functional improvement in the chordoma population who are admitted to an inpatient rehabilitation facility postoperatively. While there is a high rate of acute hospital transfer and postoperative complications, these values are comparable to prior studies in this population. With the increasing prevalence of cancer survivors, improving function during and after cancer treatment is extremely important. Implications for Rehabilitation Chordoma patients who are admitted to inpatient rehabilitation facilities after surgical tumor resection experience improvement in multiple functional domains. Chordoma patients admitted to inpatient rehabilitation facilities experience a high rate of acute hospital transfer, but it is comparable to other cancer rehabilitation populations. Understanding the characteristics of the postoperative chordoma population is essential to direct future studies regarding cancer rehabilitation.

The Use of Ultrasound in Palliative Care and Hospice.

Palliative care aims to reduce symptom burden and enhance quality of life for those with terminal disease. Ultrasound has become an increasingly popular diagnostic and therapeutic modality due to its low cost, ease of portability, safety, and good patient acceptance. A review of the literature to date shows that as a diagnostic tool, as a therapeutic modality, and as a tool to accurately guide palliative procedures, ultrasound can have many roles in palliative care and hospice. Based on our clinical experience, musculoskeletal ultrasound can be of benefit to patients with terminal disease. Examples include adhesive capsulitis in advanced neurologic disease and chronic osteomyelitis in a patient with metastatic colon cancer. Ideally, further studies investigating the use of ultrasound in the palliative care population will be conducted in the future to enhance the availability of diagnostic and therapeutic capabilities of this particular modality.

Managing bowel and bladder impairments in sacral chordoma patients: a case-based approach.

INTRODUCTION: Chordomas are primary bone tumors that occur in the axial spine and most commonly in the sacrum. Because of their location, chordomas can affect bowel and bladder continence resulting in either an upper or a lower motor neuron functional pattern. CASE PRESENTATION: We present two cases describing chordoma's impact on bowel and bladder function and the management plan used for improvement. DISCUSSION: The accurate identification of an upper or lower motor neuron pattern in the setting of chordoma aims to significantly improve management of bowel and bladder impairment.