Caregiver-Assisted Pain Coping Skills Training for Patients With Dementia: A Pilot Study

Pain is common and undertreated in patients with dementia, and contributes to disability, psychological distress, neuropsychiatric symptoms and caregiver stress. The goal of this study was to develop a caregiver-assisted pain coping skills training protocol tailored for community-dwelling adults with mild-moderate dementia and their family caregivers. We conducted interviews with patients and caregivers to develop the protocol. We then conducted a single arm pilot test of the intervention’s feasibility and acceptability. Patients were recruited from an outpatient memory care clinic and screened for pain using the validated Pain, Enjoyment, General Activity (PEG) scale. The intervention included five sessions of training in pain assessment, relaxation, pleasant activity scheduling, and integrative movement. Initially sessions were conducted in person or by videoconference according to the dyad’s preference; during COVID-19 (latter half of study) all sessions were conducted remotely. Eleven dyads consented and provided baseline data [patients: mean age=77.7 years (SD=4.8), 70% non-Hispanic white; caregivers: mean age=69.6 years (SD=13.3); 91% non-Hispanic white; 73% spouses]. Nine dyads (82%) completed all five sessions. Caregivers reported high levels of satisfaction with the intervention (mean=3.4 on 1-4 scale) and frequent use of pain coping skills (mean=3-4 days/week). On average, patients reported pre-post decreases in pain severity (mean=-1.2, SD=1.8) and pain interference (mean=-0.64, SD=0.67) on the Brief Pain Inventory. Overall these findings suggest that a behavioral pain coping intervention for patients with mild-moderate dementia and their caregivers is feasible, acceptable, and potentially helpful for managing pain.

Partnering to cope with pain: A pilot study of a caregiver-assisted pain coping skills intervention for patients with cognitive impairment and dementia

Objective To develop a new caregiver-assisted pain coping skills training protocol specifically tailored for community-dwelling persons with cognitive impairment and pain, and assess its feasibility and acceptability. Method In Phase I, we conducted interviews with 10 patient–caregiver dyads to gather feedback about intervention content and delivery. Phase II was a single-arm pilot test to evaluate the intervention's feasibility and acceptability. Dyads in the pilot study (n = 11) completed baseline surveys, received five intervention sessions, and then completed post-intervention surveys. Analyses focused on feasibility and acceptability. Results Dyads responded positively to the pain coping skills presented in the interviews; their feedback was used to refine the intervention. Findings from the pilot study suggested that the intervention was feasible and acceptable. 69% of eligible dyads consented, 82% completed all five intervention sessions, and 100% completed the post-treatment assessment. Caregivers reported high satisfaction ratings. They also reported using the pain coping skills on a regular basis, and that they found most of the skills helpful and easy to use. Significance of results These preliminary findings suggest that a caregiver-assisted pain coping skills intervention is feasible and acceptable, and that it may be a promising approach to managing pain in patients with cognitive impairment.

Pilot study of an internet-based pain coping skills training program for patients with systemic Lupus Erythematosus

Background Patients with Systemic Lupus Erythematosus (SLE) often experience pain and other symptoms that negatively impact quality of life. Interventions that enhance the use of behavioral and cognitive coping strategies may lead to improved outcomes among patients with SLE. Pain coping skills training (PCST) programs have been shown to improve outcomes among patients with other rheumatic conditions, but there have been no trials of PCST among patients with SLE. This study was a preliminary assessment of the feasibility and efficacy of painTRAINER, an automated, internet-based PCST program, among patients with SLE. Methods Participants (n = 60) with SLE from one health care system were randomly assigned with equal allocation to painTRAINER or a wait list control group. PainTRAINER involves 8 modules; participants were instructed to complete one module weekly, along with practice activities for each cognitive or behavioral coping skill. Outcome measures were assessed at baseline and 9-week follow-up, including the Pain Catastrophizing Scale, PROMIS Subscales (Pain Interference, Physical Function, Sleep Disturbance, Anxiety, Depression, Fatigue and Participation), and the LupusPRO questionnaire. Mean changes in outcomes from baseline to follow up and Cohen’s d effect sizes were computed. Results Effect sizes for the painTRAINER group (relative to the wait list group) were small, with changes being greatest for the PROMIS Depression score (d = − 0.32). Among those randomized to the painTRAINER group, 50% accessed the program (“painTRAINER users”). Most of those who did not access the program stated that they did not receive instructions via email. Effect sizes for “painTRAINER users” (relative to wait list) were larger than for the whole painTRAINER group: Pain Catastrophizing d = − 0.60, PROMIS Pain Interference d = − 0.3., PROMIS Depression d = − 0.44, LupusPRO Health-Related Quality of Life d = 0.30. Conclusions PainTRAINER users reported meaningful improvements in multiple physical and psychological outcomes, supporting the potential of PCST programs to benefit individuals with SLE. However, strategies are needed to improve engagement with the program and tailor content to comprehensively address key SLE symptoms and challenges. Trial registration NCT03933839, May 1, 2019.

Caregiver-guided pain coping skills training for patients with advanced cancer: Results from a randomized clinical trial

Background: Pain is a major concern among patients with advanced cancer and their family caregivers. Evidence suggests that pain coping skills training interventions can improve outcomes, however they have rarely been tested in this population. Aim: To test the efficacy of a caregiver-guided pain coping skills training intervention. The primary outcome was caregiver self-efficacy for helping the patient manage pain. Design: A randomized controlled trial compared the intervention to an enhanced treatment-as-usual control. Dyads in both conditions received pain education, and those in the intervention received three sessions of pain coping skills training. Caregiver outcomes (self-efficacy; caregiver strain, caregiving satisfaction, psychological distress) and patient outcomes (self-efficacy, pain intensity and interference, psychological distress) were collected at baseline and post-intervention. Setting/participants: Two hundred two patients with stage III–IV cancer and pain and their family caregivers were enrolled from four outpatient oncology clinics and a free-standing hospice/palliative care organization. Results: Compared to those in the control arm, caregivers in the intervention reported significant increases in caregiving satisfaction ( p < 0.01) and decreased anxiety ( p = 0.04). In both conditions, caregivers reported improvements in self-efficacy, and patients reported improvements in self-efficacy, pain severity and interference, and psychological distress. Conclusions: This is the first study to test a pain coping skills intervention targeted to patients and caregivers facing advanced cancer. Findings suggest that pain education provides benefits for patients and caregivers, and coping skills training may be beneficial for caregivers. Further research is needed to optimize the benefits of education and pain coping skills training for improving cancer pain outcomes. Trial registration: ClinicalTrials.gov NCT02430467, Caregiver-Guided Pain Management Training in Palliative Care