Trajectories of caregiver burden in families of adult cystic fibrosis patients.

ABSTRACTObjectives:Little is known about the experience of family caregivers of adults with cystic fibrosis (CF). This information is important for the identification of caregivers at risk for burden. METHODS: This was a longitudinal analysis of survey data obtained from caregivers of adult CF patients participating in an early intervention palliative care trial. Caregivers completed the validated Brief Assessment Scale for Caregivers (BASC) repeatedly over a 28-month period. Mixed-effects modeling evaluated multivariate associations with positive and negative caregiver perceptions over time. RESULTS: Of the 54 caregivers, 47.9% were spouses. The mean age was 50.9 years (SD = 13.2); 72.2% were women; 75.9% were married; and 63.0% were employed. At baseline, the BASC revealed large variations in positive and negative perceptions of caregiving. Although average scores over time were unchanging, variation was greater across caregivers than within caregivers (0.49 vs. 0.27, respectively). At baseline, the positive impact of caregiving in the sample was higher than the negative impact. Multivariate analysis revealed that patients' baseline pulmonary function and their full-time employment status predicted caregiver burden over time. SIGNIFICANCE OF RESULTS: Caregivers of CF patients varied in their positive and negative caregiving experiences, although burden levels in individual caregivers were stable over time. When the disease was advanced, caregivers of CF patients experienced more overall burden but also more positive impact. This suggests that the role of caregivers may become more meaningful as disease severity worsens. In addition, full-time patient employment was associated with lower caregiver burden regardless of disease severity. This suggests that burden in CF caregivers may be predicted by financial strain or benefits conferred by patient employment. These associations require further investigation to determine whether highly burdened caregivers can be identified and assisted using tailored interventions.

Addressing the burden of illness in adults with cystic fibrosis with screening and triage: An early intervention model of palliative care.

BACKGROUND: Novel models that improve generalist-level palliative care for cystic fibrosis (CF) are needed to address the burden of this illness. A screening-and-triage model has the potential to identify clinical problems requiring immediate follow-up by CF professionals. This study describes such a model and its immediate impact on care delivery for CF patients during a two-year period. METHODS: Eligible adults completed monthly online screening for sources of distress. If results revealed one or more "indicators of concern" on two consecutive screenings, this triggered an attempted triage by a social worker. Completed triages led to prompt follow-up by CF professionals for clinical problems, if indicated. Process data were summarized and generalized linear mixed models were used to evaluate baseline patient characteristics (symptom distress, quality of life, and sociodemographics) associated with the need for prompt follow-up. RESULTS: A total of 1,015 monthly surveys were completed by 74 patients; 634 (66 patients) had >1 indicators of concern; and 164 surveys (46 patients) had >1 indicators for two consecutive surveys (e.g., global distress, pain, dyspnea, and psychological symptoms). The 164 attempted triages yielded 84 completed triages (51.2%), of which 39 (46.4%) required prompt follow-up. In multivariable analyses, older patients and those with higher symptom distress at baseline were more likely to require prompt follow-up (p < .05). CONCLUSIONS: Web-based screening that assesses varied domains of distress or burden can identify a subset of CF patients whose clinical problems may benefit from immediate medical or psychological attention. Additional investigations should improve screening efficiency.

Multicultural competence and evidence-based practice in group therapy.

The multicultural competence (MC) and evidence-based practice (EBP) initiatives have each generated healthy debates in the mental health field, with ample implications for clinical training and practice. Using two case illustrations, we highlight practical challenges and prospects in the intersection of MC and EBP. To facilitate complementary practice of MC and EBP, we offer strategies for the group therapist as a "local clinical scientist" to deliver culturally responsive treatments. We stress the importance of cultural adaptation of EBP models, namely, modifying evidence-based interventions that involve changes in service delivery, in the nature of the therapeutic relationship, or in components of the treatment itself to accommodate the cultural beliefs and behaviors of racial-cultural minority clients. Cultural adaptation of EBP in group therapy needs to be grounded in developmental contextualism and social justice. We discuss the two cases with an eye toward advancing multicultural competence in group therapy.

Does the scoring of late responses affect the outcome of the paced auditory serial addition task (PASAT)?

The Paced Auditory Serial Addition Task (PASAT) is a cognitive task purported to measure working memory, speed of information processing, and sustained and divided attention (Spreen, O. & Strauss, E. (1998). A compendium of neuropsychological tests: administration, norms, and commentary (2nd ed.). New York, NY: Oxford University Press.) The current study examined whether treating late responses on the PASAT as correct or as incorrect can significantly affect the outcome of the test in individuals with Multiple Sclerosis (MS). Subjects consisted of 59 individuals with MS and 37 healthy controls (HC). Scoring method was found to affect the number of individuals who were considered impaired on the PASAT. When participants were penalized for late responses significantly more participants, in both groups, were found to be impaired on the 2s trial of the task (MS: p<0.01; HC: p<0.05). Results indicate that that the specific scoring of the PASAT should be reported in studies that use the test.

Web-based symptom screening in cystic fibrosis patients: A feasibility study.

BACKGROUND: Cystic fibrosis (CF) causes high illness burden. Screening may identify patients who could potentially benefit from interventions for symptoms or other sources of distress. We evaluated the feasibility of a web-based system for routine monitoring. METHODS: Adult CF patients enrolled in a study of palliative care service delivery completed web-based assessments every 30 days on global distress, physical and psychological symptom distress, and the perceived benefits of discussing advance care planning (ACP) with CF clinicians. Feasibility was assessed by the rate of survey completion, survey reminders, and missed surveys during a 9-month rolling enrollment period. RESULTS: Of 74 participants (47.3% women, 94.4% white), 36.7% had comorbid diabetes, and 56.9% had an FEV1% predicted score of 40-69. In total, patients completed 456 (80.6%) of 566 surveys every 30 days over the assessment period. Sixty-five (87.8%) completed 405 (79.7%) of 508 surveys online and 9 (12.2%) completed 51 (88.0%) of 58 surveys using a combination of online, telephone, and mail-based methods. Many surveys were completed without reminders (online: 261 [64.4%] of 405; combined methods: 29 [56.9%] of 51), with 166 (36.4%) surveys requiring 1 or more reminders. Further, 23.0% (17) of patients noted elevated global distress; 20.3% (15) endorsed physical symptom distress, 12.2% (9) had psychological distress, and 58.1% (43) reported that discussing ACP would be beneficial. CONCLUSIONS: Repeated web-based screening for symptom distress and ACP preferences is feasible in adult CF patients. Future studies should assess the system's generalizability and staff resources when implementing reminders and non-web methods of completion.

The Open-Trial Selective Reminding Test (OT-SRT) as a tool for the assessment of learning and memory.

The Open Trial Selective Reminding Test (OT-SRT) is a modification of the SRT that also evaluates new learning abilities. The examinee is asked to learn a list of 10 words over a maximum of 15 trials. Using a criterion-referenced approach, the list is repeatedly administered until a criterion of complete recall on two consecutive trials is achieved. Training to criterion provides a better assessment of learning ability than the traditional fixed trial list-learning paradigm. Recall and recognition is then tested 30 and 90 minutes following the learning trials. This paper presents normative data on the OT-SRT for 117 healthy controls (Study 1) and 151 participants with clinically definite multiple sclerosis (Study 2).