Background

The population of survivors following allogeneic HSCT continues to increase, and yet their experiences of recovery and long-term survivorship have not been fully characterized. This paper presents a study protocol examining over time the functional status, psychosocial adjustment, health-related quality of life, and symptom experience of survivors who have undergone allogeneic transplantation. The aims of the study are to: 1) explore the patterns of change in these health outcomes during the survivorship phase; 2) characterize subgroups of survivors experiencing adverse outcomes; and 3) examine relationships among outcomes and demographic and clinical factors (such as age, graft-versus-host disease (GVHD), and disease relapse).

Methods

In this longitudinal observational study, adults who survive a minimum of 3 years from date of allogeneic transplantation complete a series of questionnaires annually. Demographic and clinical data are collected along with a series of patient-reported outcome measures, specifically: 1) Medical Outcomes Study SF- 36; 2) Functional Assessment of Chronic Illness Therapy (FACIT) - General, 3) FACIT-Fatigue; 4) FACIT- Spiritual; 5) Psychosocial Adjustment to Illness Scale; 6) Rotterdam Symptom Checklist-Revised; and 7) Pittsburgh Sleep Quality Index.

Conclusions

This study will provide multidimensional patient-reported outcomes data to expand the understanding of the survivorship experience across the trajectory of allogeneic transplantation recovery. There are a number of inherent challenges in recruiting and retaining a diverse and representative sample of long-term transplant survivors. Study results will contribute to an understanding of outcomes experienced by transplant survivors, including those with chronic GVHD, malignant disease relapse, and other late effects following allogeneic transplantation.

Trial Registration

ClinicalTrials.gov: NCT00128960

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.

Objective

To review the literature related to nonmyeloablative stem cell transplantation, and the unique characteristics and patient population to which it applies.

Data Sources

Research studies, research and clinical reviews, clinical experience

Conclusion

Nonmyeloablative stem cell transplantation has demonstrated effective and safe application in a heterogeneous population not otherwise eligible for an allogeneic transplantation. Although many principles are based on those of conventional myeloablative transplantation, the engraftment kinetics, patient selection and regimen related complications are distinct.

Implications for Nursing Practice

Nurses must be knowledgeable about nonmyeloablative stem cell transplantation including the provision of individualized care for a heterogeneous population. This can include non-traditional transplant indications, elderly cancer patients and those with comorbidities.