Qualitative Analysis of Initial Palliative Care Consultations in Amyotrophic Lateral Sclerosis.

BACKGROUND: Palliative care (PC) benefits patients with amyotrophic lateral sclerosis (ALS), however the needs of patients and caregivers and the optimal timing of PC discussions remains unclear. This study reports the analysis of PC consult notes from a larger feasibility trial. The specific aims of this analysis were to i) identify the PC needs of patients with ALS via qualitative analysis and ii) identify characteristics of patients and caregivers that could predict specific PC needs. METHODS: This study was nested within a nonrandomized, prospective study of patients with ALS (and their caregivers) being treated at a multidisciplinary ALS clinic. Exclusion criteria of the main study were age <18 years, inability to complete questionnaires, and prior receipt of PC. All patients were offered a PC consultation (PCC); those who accepted were included in this nested study. Consultation notes were reviewed and thematic and content analyses were conducted. The occurrence of themes across patient and caregiver contextual variables were examined. RESULTS: Thirty-two PCCs were completed between October 2020 and April 2022. Six major themes were identified: PC roles (with subthemes encompassing the spectrum of specialist PC practice including symptom management and advance care planning), engagement with PC, patients' concerns for their caregivers, caregiver-specific concerns, finances, and COVID-19. An average of 12 topics were discussed per PCC (range = 3-22). Discussion of advance care planning, care coordination, and symptom management was common, and these topics were not discussed more frequently in PCCs with patients with lower functional status, more bulbar symptoms, or lower quality of life. Time from diagnosis did not impact topics of discussion. Patients reporting more symptoms of depression more frequently required psychological support, particularly regarding loss of independence, employment, and leisure activities. DISCUSSION: Patients with ALS and their caregivers have a wide range of PC needs. These needs vary irrespective of time from diagnosis, functional status, or quality of life, therefore PCC is recommended for all patients with ALS. PCC should be individualized based on patient and caregiver preferences. TRIAL REGISTRATION INFORMATION: The study was registered with ClinicalTrials.gov (NCT04257760; https://clinicaltrials.gov/ct2/show/NCT04257760) on February 6, 2020. The first enrollment occurred on October 20, 2020.

Palliative care at any stage of amyotrophic lateral sclerosis: a prospective feasibility study.

Introduction: Many patients with amyotrophic lateral sclerosis (ALS) receive palliative care (PC) very late or not at all. The impact of PC on patients with ALS and caregivers has not been quantified. Study goals included (1) measuring the impact of early PC on quality of life and mood of patients/caregivers and (2) describing patient/caregiver satisfaction with PC. Methods: The study was a non-randomized, prospective feasibility study of patients with ALS being treated at The Ottawa Hospital ALS Clinic and their caregivers. Exclusion criteria were age < 18 years, inability to complete questionnaires, and prior receipt of PC. The ALS Specific Quality of Life-Revised (ALSSQOL-R) questionnaire (patients only) and Hospital Anxiety and Depression Scale (HADS) were completed at regular intervals for up to 2 years. Patients accepting a PC consultation completed a post-PC satisfaction survey. Primary outcome measures included ALSSQOL-R and HADS scores compared before and after PC consultation, and between groups receiving and not receiving a PC consultation. Secondary outcome measures included responses on the post-PC satisfaction survey (1 = strongly disagree, 5 = strongly agree). Results: 39 patients with ALS (age 66 ± 10 years, median time from diagnosis = 6 months) and 22 caregivers were enrolled. 32 patients had a PC consultation (30 were virtual). Patients and caregivers agreed with statements that the PC consult was helpful (mean ± SD = 4.54 ± 0.60, range = 3-5) and they would recommend PC to others with ALS (4.59 ± 0.59, range = 3-5). Participants disagreed with statements that the consult would have been better later in disease course (1.87 ± 0.80, range = 1-4) and that it took too much time/energy (1.44 ± 0.85, range = 1-4). Average ALSSQOL-R scores worsened significantly over time. HADS and ALSSQOL-R scores did not significantly differ between groups receiving and not receiving PC. Conclusion: Patients with ALS and their caregivers found virtual PC consultations beneficial irrespective of disease duration or severity. Offering routine PC to all patients with ALS is feasible and should be considered as part of standard care. Clinical trial registration: https://clinicaltrials.gov/ct2/show/NCT04257760, identifier NCT04257760.

Self-reported issues with driving in patients with chronic pain.

OBJECTIVE: To assess the driving habits, driving patterns, and barriers to driving reported by patients with chronic pain. DESIGN: Cross-sectional mail survey with self-administered questionnaires. SETTING: University-affiliated hospital. PARTICIPANTS: A sample of 223 patients seen in consultation by a physiatrist through the Chronic Pain Rehabilitation Service. INTERVENTIONS: Not applicable. MAIN OUTCOME MEASUREMENTS: Percentage of subjects who were current drivers, percentage of subjects experiencing difficulty with driving, and driving characteristics. RESULTS: Response rate was 48.9%. Of the subjects, 79% were current drivers; of the nondrivers, 56% reported stopping driving because of chronic pain. A significantly greater percentage of nondrivers (80%) than drivers (62.9%) were women (P = .039). Nondrivers reported greater levels of pain than drivers (P = .027). The mean Pain Disability Index total score was significantly lower for drivers (42.3) than for nondrivers (48.7; P = .006). Of all subjects, 70% indicated that pain limited their driving in some manner; 41% of this group indicated that they experienced quite a bit or a great deal of difficulty driving. Factors that limited driving included pain (88.9%), fatigue (50.6%), limited joint mobility/stiffness (48.3%), and weakness (19.4%). The most frequently reported difficulties related to driving were sitting for any length of time (79.6%) and getting into the driver's seat (66.5%). Only 2.4% of current drivers had been referred for a driving assessment. CONCLUSIONS: Most people with chronic pain continue to drive and overall appear to have better functioning than those who cannot continue driving because of chronic pain. Despite being able to drive, a significant proportion of drivers with chronic pain are facing challenges not only with driving the vehicle but also with entering and positioning themselves within the vehicle. Our results suggest that chronic pain does have an impact on driving. However, it appears to be generally unrecognized as a factor for driving other than when the implications of opioid use are considered.

Fear of pain in patients with advanced cancer or in patients with chronic noncancer pain.

OBJECTIVES: pain is one of the most prevalent symptoms in patients with advanced cancer and, according to anecdotal reports, perhaps the most feared. Surprisingly, fear of pain has been the subject of little research within cancer care. The literature on chronic noncancer pain, however, suggests that fear of pain contributes to limitations in function in populations with diverse chronic illness. Little is known about the extent to which such findings might generalize from patients with chronic noncancer pain to those with chronic cancer pain. Therefore, this research examined the extent to which fear of pain is associated with limitations in function in patients with advanced cancer and also compared patients with chronic cancer and noncancer pain. METHODS: we recruited 117 patients with advanced cancer who received a referral for pain management and 118 patients with a primary complaint of chronic noncancer pain. Participants completed self-report questionnaires. RESULTS: findings revealed similarities between the groups for fear of pain and limitations in function, but they differed on level of depression and pain severity (patients with noncancer pain were more depressed and reported higher pain severity). Fear of pain independently predicted limitations in function in both groups controlling for demographic variables and pain severity. When depression and physical symptoms were controlled, fear of pain predicted limitations in function only in patients with advanced cancer. DISCUSSION: the findings emphasize the importance of psychological dimensions of pain in patients with advanced cancer, as well as the similarities and differences between the 2 groups of patients suffering from chronic pain.

Bilateral anterior superior iliac spine pressure ulcers: a case report.

The most frequent sites for pressure ulcers are the occiput, sacrum, ischial tuberosities, trochanters, lateral malleoli, and posterior heels. A 27-year-old woman with Wegener's granulomatosis was admitted to our rehabilitation unit after spending 65 days in an intensive care unit and 40 days in an internal medicine ward. She required mechanical ventilation because of respiratory failure. Adequate oxygenation was only achieved in the prone position. As a result, she developed bilateral anterior superior iliac spine pressure ulcers. Pressure ulcers in this location have not been reported in the literature. Complicating factors included variable levels of oxygenation, malnutrition, anemia, and steroid therapy. Complete healing, documented with serial photographs, occurred over 9 months. Although prone positioning can improve pulmonary gas exchange, it exposes the patient to unique complications. When it is required, specific care should be directed to the unusual weight-bearing surfaces to avoid pressure ulcers.