Psychosocial counseling of patients planned for hematopoietic stem-cell transplantation for malignant conditions-practical challenges and solutions from India.

Hematopoietic stem-cell transplantation (HSCT) is a life-saving procedure often performed to cure relapsed and difficult-to-treat malignancies. Only a handful of centers in India were initially involved in the delivery of these services. However, in the last decade, more than 100 centers in the private and public domain have started offering transplant services in the country. Moreover, there are funding options, which has opened up this expensive treatment options for economically backward patients. Costs apart, there are multiple social, familial, and emotional challenges faced by these patients. A multidisciplinary support team involving social workers, psychologists, and transplant nurses, besides the treating hematologist/oncologist, is required for the optimum care of these patients. These challenges, in the Indian context, are often unique. Unfortunately, there is limited information and resource available to guide counseling of patients planned for HSCT in India. We conducted a workshop at our center where a panel of experts with experience in dealing with patients undergoing HSCT discussed issues faced by them. These discussions constitute a valuable resource for counseling patients planned for HSCT. They were transcribed by a postgraduate doctor and are summarised here in a case-based format.

Association between body image dissatisfaction and poor quality of life and depression among patients with hematopoietic stem cell transplantation.

PURPOSE: This study aims to evaluate the association between body image dissatisfaction and quality of life and depression among patients after hematopoietic stem cell transplantation (HSCT). METHODS: We conducted a cross-sectional survey at three university-based HSCT outpatient clinics and the Korea Blood Cancer Association. We assessed the body image using the body image scale; quality of life and depression were measured using the World Health Organization Quality of Life-BREF and the Patient Health Questionnaire 9, respectively. Univariate and multivariate linear regression models were used to find an association between body image, quality of life, and depression. RESULTS: Among 163 study participants, 71.8% were male, and the mean age of the participants was 48.3 (SD = 11.2). Over 70% of the participants reported that they felt less physically and sexually attractive due to HSCT, and 39.3% of the patients were dissatisfied with their body image. In fully adjusted models, patients with dissatisfied body image had significantly poorer quality of life (- 13.68, 95% confidence interval [CI] = - 18.16, - 9.21). Moreover, patients with body image dissatisfaction were 8.59 times (95% CI = 3.79, 19.48) more likely to have depressive symptoms than patients without it. CONCLUSION: The majority of HSCT patients experienced body image dissatisfaction, which was significantly associated with poor quality of life and depression. It would be essential to evaluate body image after HSCT and provide appropriate interventions for preventing further psychological consequences.

Distress and quality of life in patient and caregiver dyads facing stem cell transplant: identifying overlap and unique contributions.

PURPOSE: Allogeneic hematopoietic stem cell transplantation (Allo-HSCT) is a demanding treatment requiring caregiver support. The pre-transplant period is particularly stressful. How patient and caregiver dyads respond to these stressors can impact post-transplant outcomes. The purpose of this cross-sectional study was to assess pre-transplant patient and caregiver distress, patient quality of life (pQoL), and simultaneously investigate relationship between caregiver distress, patient distress, and patient QoL. METHODS: We measured caregiver anxiety, depressive symptoms, perceived stress, sleep quality, caregiver burden, and pQoL in148 dyads compared to clinical thresholds or population norms. To reduce comparisons, we created a composite distress score from affective measures. Associations within dyads were examined via correlation and path analysis. RESULTS: Most dyads scored above norms for psychological measures. Patient distress was positively associated with caregiver distress. Higher caregiver distress significantly predicted poorer pQoL after accounting for the interdependence of patient and caregiver distress. Specifically, patients' physical functioning was the primary driver of this interrelationship. CONCLUSIONS: Allo-HSCT patients and their caregivers reported elevated distress pre-transplant. Both patient and caregiver distress contributed to pQoL, with patients' physical functioning accounting significantly for caregiver well-being. Supporting the patient-caregiver dyad before transplantation is a priority for supportive services.

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

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.

Quality of Life of Caregivers of Hematopoietic Cell Transplant Recipients.

Caregivers are critical to recipient recovery after hematopoietic cell transplant (HCT); however, little is known about their long-term health and quality of life (QoL). In this study we surveyed 4446 caregiver-recipient pairs in the post-HCT period to describe their QoL and its determinants. In total, 849 caregiver-recipient pairs at a median of 6 years after autologous or allogeneic HCT responded. Among 849 responding caregivers at a median of 6 years post-HCT, 67% of caregivers were women and 68% indicated they were still providing care to the recipient. Mean and median QoL measures of caregivers were at or above general population norms; however, approximately 20% of caregivers reported poor QoL relative to general population norms. Multivariate analysis revealed that caregiver characteristics, including age, gender, and educational attainment, were important determinants of caregiver QoL. Additional determinants of caregiver QoL included recipient QoL, relapse after autologous HCT, and ongoing use of immunosuppression after allogeneic HCT. Additionally, the prevalence of depression and sleep disorders appear to be higher in caregivers than in the general population. We have identified a population of caregivers who may benefit from interventions aimed at improving QoL and health outcomes. HCT clinical practice should also consider caregiver well-being.

Psychosocial risk predicts high readmission rates for hematopoietic cell transplant recipients.

Hematopoietic cell transplantation (HCT) is an intensive treatment resulting in disease control however subsequent psychosocial distress is common. Screening for psychosocial risk factors that contribute to morbidity is underutilized; moreover, the value in screening is uncertain. We performed a retrospective study of 395 HCT patients who were screened for psychosocial risk using the Transplant Evaluation Rating Scale (TERS). Patients were classified by psychosocial risk as no-risk (TERS = 26.5, 52%) vs. at-risk (TERS > 26.5, 48%), with at-risk patients stratified by cumulative deficits into mild risk (TERS = 27-35.5, 39%) and moderate risk (TERS > 35.5, 9%). At-risk patients were more likely to be readmitted within 90 days (mild risk HR = 1.62, p = 0.02; moderate risk HR = 2.50, p = 0.002). Prior psychiatric history (HR = 1.81, p = 0.002) and poor coping skills (HR = 1.64, p = 0.04) also influenced readmission. At-risk patients were more likely to be readmitted for infection (no-risk = 12% vs. at-risk = 25%, p = 0.002). Pre-HCT screening with the TERS did not predict survival or length of stay although at-risk patients are at a heighted risk of readmission. Implementing strategies to reduce readmission in higher risk patients is warranted.

Three sides to a story: Child, parent, and nurse perspectives on the child's experience during hematopoietic stem cell transplantation.

BACKGROUND: The experience of children undergoing hematopoietic stem cell transplantation (HSCT), including the ways in which different participants (ie, children, parents, and nurses) contribute to the overall picture of a child's experience, is poorly characterized. This study evaluated parent, child, and nurse perspectives on the experience of children during HSCT and factors contributing to interrater differences. METHODS: Participants were enrolled in a multicenter, prospective study evaluating child and parent health-related quality of life over the year after HSCT. Children (n = 165) and their parents and nurses completed the Behavioral, Affective, and Somatic Experiences Scale (BASES) at baseline (before/during conditioning), 7 days after the stem cell infusion (day+7), and 21 days after the stem cell infusion (day+21). The BASES domains included Somatic Distress, Mood Disturbance, Cooperation, and Getting Along. Higher scores indicated more distress/impairment. Repeated measures models by domain assessed differences by raters and changes over time and identified other factors associated with raters' scores. RESULTS: Completion rates were high (≥73% across times and raters). Multivariate models revealed significant time-rater interactions, which varied by domain. For example, parent-rated Somatic Distress scores increased from baseline to day+7 and remained elevated at day+21 (P < .001); children's scores were lower than parents' scores across time points. Nurses' baseline scores were lower than parents' baseline scores, although by day+21 they were similar. Older child age was associated with higher Somatic Distress and Mood Disturbance scores. Worse parent emotional functioning was associated with lower scores across raters and domains except for Cooperation. CONCLUSIONS: Multirater assessments are highly feasible during HSCT. Ratings differ by several factors; considering ratings in light of such factors may deepen our understanding of the child's experience. Cancer 2017;123:3159-66. © 2017 American Cancer Society.

An evidence-based stress management intervention for allogeneic hematopoietic stem cell transplant caregivers: development, feasibility and acceptability.

PURPOSE: Caregivers of cancer patients face challenges impacting their physical, psychological and social well-being that need attention in the form of well-designed and tested interventions. We created an eight-session individual stress management intervention for caregivers of allogeneic hematopoietic stem cell transplant (Allo-HSCT) recipients. This intervention, tested by randomized control trial, proved effective in decreasing distress. Herein, we describe the intervention including theoretical framework, development, and elements of fidelity. Implementation challenges along with recommendations for refinement in future studies are discussed with the goal of replication and dissemination. METHODS: Seventy-four of 148 caregivers received stress management training following randomization. The intervention occurred during the 100-day post-transplant period when caregivers are required. The training provided integrated cognitive behavioral strategies, psychoeducation, and problem-solving skills building as well as use of a biofeedback device. RESULTS: Seventy percent of caregivers completed all eight sessions indicating good acceptability for the in-person intervention; however, most caregivers did not reliably use the biofeedback device. The most common reason for drop-out was their patient becoming gravely ill or patient death. Few caregivers dropped out because of study demands. The need for flexibility in providing intervention sessions was key to retention. CONCLUSION: Our evidence-based stress management intervention for Allo-HSCT caregivers was feasible. Variability in acceptability and challenges in implementation are discussed and suggestions for refinement of the intervention are outlined. Dissemination efforts could improve by using alternative methods for providing caregiver support such as telephone or video chat to accommodate caregivers who are unable to attend in-person sessions.

Barriers to psychological care among primary caregivers of children undergoing hematopoietic stem cell transplantation.

PURPOSE: This substudy of an intervention trial aimed to describe barriers to participation in psychological care among primary caregivers of children who were about to undergo a hematopoietic stem cell transplantation (HSCT), including demographic and medical correlates. METHOD: Three hundred and twelve primary caregivers of children undergoing HSCT who were approached to participate in a psychological intervention trial (n = 218 enrollees and 94 decliners) completed a measure of barriers to psychological care. RESULTS: The most frequently endorsed barriers to care were focusing on the child as priority, not wanting to leave the child's bedside, and already having adequate psychosocial support. The least frequently endorsed barriers were location, wait times, and stigma around seeking psychological care. CONCLUSIONS: Results suggest that explaining how psychological care for a primary caregiver can positively affect their ill child may reduce barriers to seeking needed support services. Certain practical barriers to care may be irrelevant in inpatient settings where psychological support is offered.

Hematopoietic stem cell donation: psychological perspectives of pediatric sibling donors and their parents.

Allogeneic stem cell transplantation (SCT) is widely used for treatment of various life-threatening pediatric diseases. It is an intensive process that psychologically affects the whole family. Pediatric donors represent a very unique, underreported, group. The aim of this study is to investigate the sibling donors' and their parents' perspective on the donation process. The cohort included 36 sibling donors and 50 parents of pediatric patients who underwent allogeneic SCT between 1995 and 2010 and were alive at the time of the study. Mean age at donation was 14.78±8.350 years in donors' group and 8.22±4.639 years in parents' group. Data were collected by anonymous questionnaires. Three psychological dimensions were analyzed: donors' personal perspective; donor-recipient interpersonal relationship and the influence of the donation on the family unit. Results showed that the donors experienced a wide range of complex emotional responses, positive and negative, whereas the parents' responses were mainly positive and less complex. This study presents both the sibling donor's and parents' perspective, giving a more complete picture of the donation process within the family. The effects of this intense experience of SCT has a long-term impact on the whole family, indicating the need for follow-up and psychosocial support.

Long-term outcomes of autologous hematopoietic stem cell transplantation with reduced-intensity conditioning in multiple sclerosis: physician's and patient's perspectives.

High-dose immunosuppressive therapy (HDIT) with autologous hematopoietic stem cell transplantation (AHSCT) is a promising approach to treatment of multiple sclerosis (MS) patients. In this paper, we present the long-term outcomes of a prospective single-center study with the analysis of the safety and efficacy of HDIT + AHSCT with reduced-intensity BEAM-like conditioning regimen in 99 MS patients: mean age-35 years old; male/female-39/60; median Expanded Disability Status Scale (EDSS) = 3.5; 43 relapsing/remitting MS, 56 progressive MS. No transplant-related deaths were observed. The mobilization and transplantation procedures were well tolerated. At 6 months post-transplant, neurological improvement or stabilization was observed in all the patients except one. Cumulative incidence of disease progression was 16.7 % at 8 years after HDIT + AHSCT. Estimated event-free survival at median follow-up of 48.9 months was 80 %: 83.3 % in relapsing/remitting MS vs 75.5 % in progressive MS. Sixty-four patients who did not progress during the first 3 years post-transplant and were monitored for more than 3 years were included in long-term outcome analysis. At the median long-term follow-up of 62 months, 47 % of patients improved by at least 0.5 points on the EDSS scale as compared to baseline and exhibited improvement during the entire period of follow-up; 45 % of patients were stable. No active, new, or enlarging lesions on magnetic resonance imaging were registered in patients without disease progression. AHSCT was accompanied by a significant improvement in patient's quality of life. Due to the fact that patient selection was quite different to the other studies and that the information about disease activity prior in the disease course and its treatment was inhomogeneous, comparison with the results in the literature should be done with caution. Thus, the risk/benefit ratio of HDIT + AHSCT with reduced-intensity BEAM-like conditioning regimen in our population of MS patients is very favorable. The consistency of our long-term clinical and quality of life results, together with the persistence of improvement, is in favor of the efficacy and safety of this treatment approach in MS patients.

Quality of life and mood of patients and family caregivers during hospitalization for hematopoietic stem cell transplantation.

BACKGROUND: We conducted a study to investigate the impact of hospitalization for hematopoietic stem cell transplantation (HCT) on the quality of life (QOL) and mood of patients and family caregivers (FC). METHODS: We conducted a longitudinal study of patients who were hospitalized for HCT and their FC. We assessed QOL (using the Functional Assessment of Cancer Therapy-Bone Marrow Transplantation) and mood (using the Hospital Anxiety and Depression Scale) at baseline (6 days before HCT), day +1, and day +8 of HCT. We administered the Medical Outcomes Study Health Survey Short Form-36 to examine FC QOL (Physical Component Scale and Mental Component Scale). To identify predictors of changes in QOL, we used multivariable linear mixed models. RESULTS: We enrolled 97% of eligible patients undergoing autologous (30 patients), myeloablative (30 patients), or reduced intensity (30 patients) allogeneic HCT. Patients' QOL markedly declined (mean Functional Assessment of Cancer Therapy-Bone Marrow Transplantation score, 109.6 to 96.0; P<.0001) throughout hospitalization. The percentage of patients with depression (Hospital Anxiety and Depression Scale-Depression score of >7) more than doubled from baseline to day +8 (15.6% to 37.8%; P<.0001), whereas the percentage of patients with anxiety remained stable (22.2%; P = .8). These results remained consistent when data were stratified by HCT type. Baseline depression (ß, -2.24; F, 42.2 [P<.0001]) and anxiety (ß, -0.63; F, 4.4 [P =.03]) were found to independently predict worse QOL throughout hospitalization. FC QOL declined during the patient's hospitalization (physical component scale: 83.1 to 79.6 [P =.03] and mental component scale: 71.6 to 67.4 [P =.04]). CONCLUSIONS: Patients undergoing HCT reported a steep deterioration in QOL and substantially worsening depression during hospitalization. Baseline anxiety and depression predicted worse QOL during hospitalization, underscoring the importance of assessing pre-HCT psychiatric morbidity.

Spirituality and the recovery of quality of life following hematopoietic stem cell transplantation.

OBJECTIVE: Spirituality has been linked to improved adjustment and functioning in individuals with cancer; however, its effect on quality of life following hematopoietic stem cell transplantation (HSCT) has not been well-studied. This study investigated changes in spirituality in hematologic cancer patients recovering from HSCT and relationships between spirituality and dimensions of quality of life following HSCT. METHODS: Participants (N = 220) completed measures of two dimensions of spirituality (meaning/peace and religious faith), depression, anxiety, fatigue, pain, and physical and functional well-being prior to transplant and at 1-, 3-, 6-, and 12-months posttransplant. RESULTS: Meaning/peace declined at 1-month posttransplant and returned to pretransplant levels by 6-months posttransplant, and faith increased from pretransplant to 6-months posttransplant. Mixed-effects linear regression models indicated that greater pretransplant meaning/peace, but not religious faith, predicted less depression, anxiety, and fatigue, and better physical and functional well-being during the 12-months following transplant. CONCLUSIONS: The capacity to find meaning and peace may facilitate recovery following HSCT. Results suggest that spirituality may be a resilience factor that could be targeted to improve quality of life for HSCT recipients.

Advance care planning among hematopoietic cell transplant patients and bereaved caregivers.

Younger, healthier patients contemplating high-risk (but potentially curative) hematopoietic cell transplants (HCT) may not consider advance care planning (ACP). We investigated the effect of pre transplant ACP in surviving HCT patients and bereaved caregivers using retrospective, audiotaped telephone surveys. Subjects were identified between 2001 and 2003 via databases at two high-volume HCT centers. Transcripts were coded by two investigators, with differences resolved by consensus. HCT survivors (n=18) were interviewed a median of 13 months after HCT for acute leukemia (7), lymphoma (5) or other (6); 50% had living wills, 72% had a formal proxy. Twelve (67%) had discussed mortality risk pre HCT with the medical team. Of those, 92% felt their hope and perception of the medical team's truthfulness was increased or unchanged (I/U) by the conversation, whereas all felt clinician commitment to transplant was I/U. Bereaved caregivers (n=11) were interviewed a median of 10 months post death (median 31 days post HCT, range 13-152). Nine (82%) had discussed mortality risk pre-HCT with the medical team; 7 (78%) felt hope was I/U, all felt clinician commitment to transplant and truthfulness was I/U, and most felt ACP reduced burden (67%). ACP discussions with patients and caregivers pre-HCT did not affect hope and supported confidence in medical teams.

Identifying religious and/or spiritual perspectives of adolescents and young adults receiving blood and marrow transplants: a prospective qualitative study.

The potential benefits (or detriments) of religious beliefs in adolescent and young adults (AYA) are poorly understood. Moreover, the literature gives little guidance to health care teams or to chaplains about assessing and addressing the spiritual needs of AYA receiving hematopoietic stem cell transplants (HSCT). We used an institutional review board-approved, prospective, longitudinal study to explore the use of religion and/or spirituality (R/S) in AYA HSCT recipients and to assess changes in belief during the transplantation experience. We used the qualitative methodology, grounded theory, to gather and analyze data. Twelve AYA recipients were interviewed within 100 days of receiving HSCT and 6 participants were interviewed 1 year after HSCT; the other 6 participants died. Results from the first set of interviews identified 5 major themes: using R/S to address questions of "why me?" and "what will happen to me;" believing God has a reason; using faith practices; and benefitting from spiritual support people. The second set of interviews resulted in 4 major themes: believing God chose me; affirming that my life has a purpose; receiving spiritual encouragement; and experiencing strengthened faith. We learned that AYA patients were utilizing R/S far more than we suspected and that rather than losing faith in the process of HSCT, they reported using R/S to cope with illness and HSCT and to understand their lives as having special purpose. Our data, supported by findings of adult R/S studies, suggest that professionally prepared chaplains should be proactive in asking AYA patients about their understanding and use of faith, and the data can actively help members of the treatment team understand how AYA are using R/S to make meaning, address fear, and inform medical decisions.