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 5 65) were receiving their first allogeneic HSCT with at least one adult caregiver (n 5 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 (po0.001) 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 5 0.8570.05, p 5 0.001), while for caregivers it was poor (AUC 5 0.6170.08, p 5 0.28). A DT cut point of 5 was supported for patients (sensitivity 5 1.0, specificity 5 0.68), while for caregivers there was less confidence (sensitivity 5 0.70, specificity 5 0.52). Caregivers and patients reporting a higher number of problems had a greater level of distress (po0.001).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.

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 caregiver distress during allogeneic 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. Intervention/Methods: The PSE intervention consisted of four sessions of the Prepared Family Caregiver PSE model. Data were collected with an interventionist log, subject interviews and standardized questionnaires. Results Of the thirty-four adult dyads screened, twenty-four were ineligible primarily due to non-English speaking (n=11) and inconsistent caregivers (n=10). Ten dyads (n=20) were enrolled and eight dyads (n=16) completed the intervention. Of the thirty-one 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 (4.8±0.61; 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 non-spousal caregivers and those who are non-English speaking.

Caregivers for allogeneic HSCT recipients are essential partners in managing the problems during this intense treatment, yet their baseline health status is not understood. The objective of this analysis was to characterize the health status of individuals preparing to serve as transplant caregivers. Methods: Cross-sectional data were drawn from a longitudinal study including patient-identified transplant caregivers. Measures included the Pittsburgh Sleep Quality Index (PSQI), Brief Symptom Inventory-18 (BSI-18), Multidimensional Fatigue Symptom Inventory (MFSI), Health Promoting Lifestyle Profile (HPLP II), and Cancer Self-Efficacy (CASE). Results: Adult (M 5 52.8 6 14.2 years) caregivers (N 5 65) were predominantly female (78.5%) and spouses (52.3%). Forty-four (68%) were identified as a member of a caregiver 'team' while 20 (31%) were caregiving alone. The majority of caregivers (61.5%) reported at least one chronic health problem. Caregiver body mass index data revealed that 42 (65%) were either overweight or obese. Caregivers reported significantly more emotional fatigue (p # 0.001) and less vigor (p # 0.001) than healthy non-caregivers (Lim, W. et al., Arch Intern Med, 2005) and 36 (55%) reported impaired sleep. Four (6%) reported clinically significant psychological distress (GSI $ 63). Psychological distress, fatigue, and sleep quality were significantly related. Higher levels of distress and fatigue were related to impaired sleep quality (p \0.01). Caregivers with less confidence in managing the impact of HSCT or those with less frequent use of healthy behaviors, reported poor sleep quality (p 5 0.039, p 5 0.016), more distress (p 5 0.001, p \ 0.001), and more fatigue (p \0.001, p\ 0.001). Conclusion: Health issues exist for caregivers suggesting a role for assessment of caregiver health prior to the stress of the HSCT experience. In addition, attention to healthy behaviors (e.g. stress management, nutrition) and caregiver confidence may improve emotional distress and symptoms in allogeneic HSCT caregivers. Future research exploring transplant caregiver outcomes should recognize that small pre-determined caregiver networks are common which has implications for translation into practice.