Distress screening in allogeneic hematopoietic stem cell (HSCT) caregivers and patients.

UNLABELLED: Family caregivers of allogeneic hematopoietic stem cell transplant (HSCT) patients are at risk for experiencing significant psychological distress yet screening caregivers has not been well studied. OBJECTIVE: This analysis explored the psychometric characteristics of the Distress Thermometer (DT) by examining its relationship, sensitivity, and specificity relative to the Brief Symptom Inventory 18 (BSI-18) and the Multidimensional Fatigue Symptom Inventory (MFSI) in a sample of allogeneic HSCT caregivers and patients. METHODS: Longitudinal data were drawn from an ongoing intervention study for HSCT caregivers and patients. Data from one hundred and fifty-six English-speaking adults where patients (n = 65) were receiving their first allogeneic HSCT with at least one adult caregiver (n = 91) were eligible for this analysis. Study questionnaires were administered at baseline, initial discharge, and 6 weeks following discharge. RESULTS: Construct validity was supported by significant relationships (p<0.001) between the DT and the BSI-18 GSI and the MFSI-Emotional subscales for caregivers and patients. The diagnostic utility of the DT for patients was good (AUC = 0.85±0.05, p = 0.001), while for caregivers it was poor (AUC = 0.61±0.08, p = 0.28). A DT cut point of 5 was supported for patients (sensitivity = 1.0, specificity = 0.68), while for caregivers there was less confidence (sensitivity = 0.70, specificity = 0.52). Caregivers and patients reporting a higher number of problems had a greater level of distress (p<0.001). CONCLUSIONS: These findings support the validity of the DT in screening for distress in HSCT caregivers and patients. Although the diagnostic utility of the DT for HSCT caregivers may be limited, understanding factors associated with distress can guide practice for this understudied population.

An individualized dyadic problem-solving education intervention for patients and family caregivers during allogeneic hematopoietic stem cell transplantation: a feasibility study.

BACKGROUND: Allogeneic hematopoietic stem cell transplantation (HSCT) generates multiple problems that vary in complexity and create significant distress for both patients and their caregivers. Interventions that address patient and family caregiver distress during allogeneic hematopoietic stem cell transplantation (HSCT) have not been tested. OBJECTIVE: To evaluate the feasibility of conducting an individualized dyadic problem-solving education (PSE) intervention during HSCT and estimate a preliminary effect size on problem-solving skills and distress. METHODS: The PSE intervention consisted of 4 sessions of the Prepared Family Caregiver PSE model. Data were collected with an interventionist log, subject interviews and standardized questionnaires. RESULTS: Of the 34 adult dyads screened, 24 were ineligible primarily because of being non-English-speaking (n = 11) and inconsistent caregivers (n = 10). Ten dyads (n = 20) were enrolled, and 8 dyads (n = 16) completed the intervention. Of the 31 sessions, 29 were completed (94%). Worsening patient condition was the primary reason for sessions to be incomplete. Patients attended 90% of the sessions; caregivers attended 74%. Reasons for missed sessions included patient symptom distress and limited caregiver availability. Dyads reported being very satisfied (mean, 4.8 [SD, 1.8]; range, 1-5), stating "an opportunity to talk" and "creative thinking" were most beneficial. CONCLUSION: Results suggest that dyads can participate in PSE during HSCT and view it as beneficial. Participants identified the active process of solving problems as helpful. IMPLICATIONS FOR PRACTICE: Targeted interventions that promote effective, meaningful behaviors are needed to guide patients and caregivers through HSCT. Future research recommendations include testing a version of PSE with fewer sessions, including spousal and nonspousal caregivers and those who are non-English speaking.