Rates and Risk Factors for Post-Traumatic Stress Disorder Symptomatology among Adult Hematopoietic Cell Transplant Recipients and Their Informal Caregivers

Abstract

Hematopoietic cell transplant (HCT) can cause significant distress in patients and their informal caregivers. Despite advances in reduced-intensity conditioning and supportive care, few recent studies have reported rates of clinically significant post-traumatic stress disorder (PTSD) symptomatology. Goals of the current study were to examine rates of PTSD and distress in patients and caregivers and to identify sociodemographic and clinical risk factors for PTSD. As part of an annual survivorship survey, 2157 HCT recipients and their caregivers were mailed self-report measures of PTSD and distress. Patients also completed self-report measures of sociodemographic information (eg, age, sex, employment status). Clinical variables (eg, time since transplant, transplant type) were captured in the transplant database. A total of 691 recipients (56% age 60 or above at the time of survey, 47% women, median 10.1 years post-HCT) and 333 caregivers provided PTSD data and were included in the current analyses. More caregivers reported PTSD (6.6%) than patients (3.3%; P = .02). Patients or caregivers who had PTSD reported significantly higher distress related to uncertainty, family strain, medical demands, finances, identity, and health burden (P < .0001) compared with those without PTSD. Patient but not caregiver PTSD was associated with more recent transplant (P = .01 and P = .16, respectively). Rates of PTSD are relatively low in long-term survivors of HCT and their caregivers. Nevertheless, results are consistent with other studies of cancer caregiving suggesting that caregivers often experience greater distress than patients. Timely referral to psychosocial services should be offered to both HCT recipients and caregivers reporting symptoms of PTSD.

Family caregivers’ support needs during allo-HSCT—a longitudinal study

“…FC of patients with mixed cancer diagnoses reported a decrease in unmet needs from 6 to 24 months post-diagnosis [ 41 ]. Our result reveals that many support needs do not diminish by themselves, which is in line with earlier studies showing that FC of allo-HSCT patients experience high levels of distress for a long time [ 10 , 11 , 15 ], which is related to the uncertainty of the situation.…”

“…FC often show high levels of distress, sometimes even higher than the recipients [4]. Until now, research on FC of HSCT recipients has mainly focused on their experiences [6][7][8], quality of life [6], psychological distress [7,[9][10][11] and caregiver burden [7,12].…”

Risk and Protective Factors for PTSD in Caregivers of Adult Patients with Severe Medical Illnesses: A Systematic Review

“…Many disease-related factors have been found to enhance PTSD symptoms. The uncertainty related to disease and the family strain have been related to PTSD symptoms in a study on 333 caregivers of hematopoietic cell transplant recipients [52]. Richardson et al [53] found that in 78 caregivers of patients with head and neck cancer, having perceptions of low benefits from treatment and the presence of many patient symptoms, increased the risk of experiencing symptoms of PTSD in caregivers.…”

“…Furthermore, Dew et al [47] examined 190 family caregivers to heart transplant recipients and found that in the first year post-transplant, caregivers presented higher PTSD symptoms. A more recent study on informal caregivers of adult hematopoietic cell transplant recipients showed that a shorter time since transplant was associated with greater PTSD symptoms in caregivers [52]. Moreover, Teixeira and Pereira [54] found that a shorter disease and caregiving duration were associated with a poorer outcome in terms of PTSD symptomatology, while Carek et al [48], examining 51 caregivers of recent stroke survivors, found that an increased time since the event, with consequently more chronic stressors related to the sequelae of the medical event, was related to higher PTSD symptoms.…”

“…As concerns the prior psychiatric history, having a history of depression [43,45], depressive and anxiety disorders [47], or more generically a personal positive history for psychiatric illness [38] were associated with increased PTSD symptoms. Even the presence of psychiatric symptoms in patients was found to be a risk factor for some authors, particularly patient's PTSD symptoms in three studies [50,52,60] and panic disorder symptoms in another study on 168 caregivers of advanced cancer patients [34]. Negative coping styles have been related to greater PTSD symptoms severity in a study on 86 family members and friends of patients who have suffered spontaneous subarachnoid hemorrhage [61].…”