Predonation health-related quality of life scores predict time to recovery in hematopoietic stem cell donors.

The physical reactions to hematopoietic stem cell donation have been extensively studied, but less is known about factors that predict poorer donation experiences. The aim of this prospective study was to examine demographic and health-related quality of life (HRQOL) factors that might be associated with recovery and side effects. We also described the changes in HRQOL during the donation process. In total, 275 peripheral blood stem cell (PBSC) and 37 bone marrow (BM) consecutive donors completed the SF-36 questionnaire predonation and 4 weeks, and 3 months postdonation. Predonation HRQOL markers were the strongest predictors of time to recovery. Poorer predonation physical health was associated with longer recovery (P = .017) and certain side effects in PBSC donors. Poorer predonation mental health was associated with longer recovery in BM donors (P = .03) and pain after PBSC donation (P = .003). Physical HRQOL scores declined significantly from predonation to 4 weeks postdonation. This was shown both for PBSC and BM donors (P < .001 and P = .009, respectively), but the decline was much greater for BM donors. There was a return to predonation HRQOL values 3 months after donation in both groups with values well above the mean of the general population (P < .001).

Caregiver burden among primary caregivers of patients undergoing peripheral blood stem cell transplantation: a cross sectional study.

PURPOSE: This study aimed to identify caregiver burden and influencing factors on the burden in primary caregivers of peripheral blood stem cell transplantation patients within 2-12 months following transplant, indicating early recovery period after discharge. METHOD: This descriptive cross sectional study was carried out at hematopoietic stem cell transplantation outpatient units of three university hospitals in Turkey. A total of 55 patient and caregiver dyads were recruited and interviewed. The data were collected using questionnaires developed by the researchers and caregiver burden was measured with the Zarit Burden Interview. RESULTS: The mean score of Zarit Burden Interview was 28.41 (SD = 13.90). Patients' symptoms including nausea and self depreciation feeling were related to greater caregiver burden. Self-depreciation was referred to feeling undervalued. The mean score of the tool was significantly higher in caregivers who have not been educated beyond primary school and also caregivers who had lower income. Caregivers who supported their patients to fulfill physical needs and who did not receive help for meeting patients' psychological needs had statistically more elevated levels of burden. Moreover, the extent of care giving activities undertaken was positively correlated with caregiver burden scores. While positive impact of the care giving process on family relations decreased caregiver burden; negative effect increased the burden. CONCLUSIONS: This study suggests that caregiver burden of primary caregivers caring for peripheral blood stem cell transplantation patients varies by education, income status, and the extent of care giving activities undertaken. Changes in family ties and relations due to care giving effected caregiver burden.

Impact of GvHD on quality of life in long-term survivors of haematopoietic transplantation.

Allogenic haematopoietic stem cell transplantation (HCT) has become an effective therapy in patients with various haematological malignancies. GvHD is known to be a major complication in this patient group and is assumed to have a major impact on patients' quality of life (QOL). Patients after BMT or transplantation of mobilized PBSCs were considered for enrolment in the study 6 months after transplantation. QOL and symptom burden were assessed using the EORTC QLQ-C30 and the QLQ-HDC29. Data from age- and sex-matched healthy controls were collected for comparison. In all, 100 patients (55.0% women; mean age 46.3 years) after allogeneic HCT were included in the study. In this patient group, we found a clinically relevant impact of GvHD on role functioning, global QOL, fatigue, dyspnoea, gastrointestinal side effects, worries/anxiety and skin problems. In comparison to healthy controls, various aspects of QOL were severely impaired. Our study revealed severe impairments of QOL in survivors of HCT, in particular in those suffering from GvHD. Taking into account, that the prevalence of GvHD might be higher in patients after PBSCT compared with patients after BMT, PBSCT is expected to lead to more severe impairments of QOL than BMT.

Utility of the psychosocial assessment of candidates for transplantation (PACT) scale in allogeneic BMT.

The psychosocial assessment of candidates for transplantation (PACT) scale was completed before the transplant on 120 patients who underwent allogeneic transplant from November 2003 to June 2007. The PACT has eight subscales, each rated on a 5-point scale, and an initial and final rating independently based on the rater's overall impressions of the candidate's acceptability for transplant. This exploratory study assessed the clinical utility of the PACT scale for psychosocial screening in allogeneic BMT. Associations of the PACT subscales and the final rating with sixteen post transplant medical outcomes were examined using the Jonchkheere-Terpstra test, the Cochran-Armitage test or the Cox proportional hazards analysis. Significant relationships (P

Symptom burden in patients undergoing autologous stem-cell transplantation.

Patients who undergo autologous peripheral blood stem cell (PBSC) transplantation experience multiple symptoms that adversely affect quality of life. We assessed symptoms during the acute phase of autologous PBSC transplantation to determine the severity of individual symptoms and to determine overall symptom profiles in 100 patients with multiple myeloma or non-Hodgkin's lymphoma. Study subjects completed the blood and marrow transplantation module of the M. D. Anderson Symptom Inventory before hospitalization, during conditioning, on day of transplantation, at nadir (the time of lowest white blood cell count) and on day 30 post-transplantation. Additional symptom, quality-of-life and medical status measures were collected. Symptom means were mild at baseline, intensified during conditioning, peaked at nadir and decreased by day 30. At nadir, the most severe symptoms for the entire patient sample were lack of appetite, fatigue, weakness, feeling sick, disturbed sleep, nausea and diarrhea. Cancer diagnosis was a significant predictor of changes in symptoms over time. The patterns of fatigue, pain, sleep disturbance and lack of appetite were significantly different for patients with multiple myeloma as compared with patients with non-Hodgkin's lymphoma.

Patients' health beliefs and coping prior to autologous peripheral stem cell transplantation.

The aim of this study was to determine the associations between health locus of control (LoC), causal attributions and coping in tumour patients prior to autologous peripheral blood stem cell transplantation. Patients completed the Questionnaire of Health Related Control Expectancies, the Questionnaire of Personal Illness Causes (QPIC), and the Freiburg Questionnaire of Coping with Illness. A total of 126 patients (45% women; 54% suffering from a multiple myeloma, 29% from non-Hodgkin lymphomas, and 17% from other malignancies) participated in the study. Cluster analysis yielded four LoC clusters: 'fatalistic external', 'powerful others', 'yeah-sayer' and 'double external'. Self-blaming QPIC items were positively correlated with depressive coping, and 'fate or destiny' attributions with religious coping (P<0.001). The highest scores were found for 'active coping' in the LoC clusters 'powerful others' and 'yeah-sayer'. External LoC and an active coping style prevail before undergoing autologous peripheral blood stem cell transplantation, whereas the depressive coping is less frequent, associated with self-blaming causal attributions. Health beliefs include causal and control attributions, which can improve or impair the patient's adjustment. A mixture between internal and external attributions seems to be most adaptive.

A qualitative study of the trauma and posttraumatic growth of multiple myeloma patients treated with peripheral blood stem cell transplant.

OBJECTIVE: The study was conducted to understand the emotional impact of multiple myeloma, as well as the impact of its principle treatment, peripheral blood stem cell transplant (PBSCT). The absence of psycho-oncology research literature on this population prompted the need for a hypothesis-generating investigation. Thus, a qualitative design was used to construct a theoretical model of the trauma relating to diagnosis and treatment of myeloma. The study also incorporates the important period of reflection and growth following treatment. METHODS: The sample consisted of 3 women and 3 men treated for myeloma at a New York City-based cancer treatment center. Data from individual interviews were audiotaped and transcribed. After extensive review, the data were categorized into groups of repeating ideas, themes and broad theoretical constructs. RESULTS: A five-construct model emerged from the data analysis that integrated a model of trauma and growth presented in earlier work (Auerbach et al., 2006). These constructs roughly correspond with stages of illness, but do not necessarily imply a linear process, as suggested by stage models. The first construct is diagnosis. Patients receive the news that they have multiple myeloma. Initial reactions are discussed and a treatment plan takes form. In the second construct, treatment, patients highlight the physical and emotional hurdles confronted throughout treatment. The third construct, network of safety, presents social factors that play a role in comforting patients throughout illness. Patients recognize the importance of a strong support system during their experiences. In the fourth construct, recuperation, physical energy is regained after an arduous recovery period. This contributes to higher spirits and a motivation to reengage with life. The fifth construct is reflection and new existence. Patients strive to balance a new reality that relapse and death are inevitable, along with their need to live a meaningful life. Many do not yet appreciate how their disease has impacted them, but describe how their interpersonal lives and perceptions have changed, both positively and negatively. SIGNIFICANCE OF RESULTS: Limitations of the study, future directions for research and clinical implications are discussed.

The financial requirements and time commitments of caregivers for autologous stem cell transplant recipients.

This study is a prospective evaluation of the time commitment and financial requirements of caregivers of autologous stem cell recipients during the period of inpatient hospitalization. Eligible patients identified one caregiver, and a one-page survey addressing the necessary time commitment and out-of-pocket expenses was completed by the caregiver at each visit. The caregivers of 40 patients participated (non-Hodgkin's lymphoma [n = 19], multiple myeloma [n = 18], Hodgkin's lymphoma [n = 2], or acute myelogenous leukemia [n = 1]). Caregivers included spouses (n = 35), partners/friends (n = 2), or family members (n = 3). Results were summarized for the patient's total length of stay. Each caregiver traveled a median of 829 miles over 17.8 hours. Out-of-pocket expenses varied greatly depending on whether a caregiver stayed in local accommodations (cohort 1; n = 11) or in the patient's hospital room (cohort 2; n = 29). Total expenses (median) for each caregiver in cohort 1 were dollar 849.35, including accommodations (dollar 560), gasoline (dollar 87.35), and food (dollar 202). Total expenses (median) for each caregiver in cohort 2 were dollar 181.15, including gasoline (dollar 70) and food (dollar 111.15). Each caregiver in cohort 1 lost a median of 43.5 hours of work compared with 8 hours for each caregiver in cohort 2. The results from this prospective study demonstrate that there is a significant financial and time requirement on the part of the caregiver when a family member or significant other is hospitalized for an autologous stem cell transplant.

Needs of patients and families undergoing autologous peripheral blood stem cell transplantation.

Autologous peripheral blood stem cell transplantation (APBSCT) as a rescue for myeloablative chemotherapy has become the standard of care for several malignancies. The majority of pre-transplant treatment is provided in outpatient oncology clinics and early discharge post-transplant is facilitated by the use of colony stimulating factors. The patient/family is then required to manage complex self-care in the home environment (Johns, 1998; Poloquin, 1997; Schulmeister et al., 2005). This needs assessment was undertaken to determine how to improve the quality of care delivery for patients/families undergoing APBSCT. This qualitative research utilized unstructured interviews, observation, and field notes for data collection. Data were analyzed using thematic content analysis. Four key concepts to enhance the quality of care delivery emerged: knowledge, communication, support, and skill.

Fatigue and depression in patients with lymphoma undergoing autologous peripheral blood stem cell transplantation.

PURPOSE/OBJECTIVES: To describe the patterns of depression and fatigue, including its dimensions, and the relationship between these two variables in patients with lymphoma undergoing autologous peripheral blood stem cell transplantation (PBSCT). DESIGN: Prospective, descriptive, correlational, repeated measures. SETTING: Midwestern university National Cancer Institute-designated clinical cancer center. SAMPLE: 27 patients with lymphoma aged 19 to 71 undergoing autologous PBSCT. METHODS: The revised Piper Fatigue Scale was used to measure fatigue and its dimensions. The Center for Epidemiologic Studies' Depression Scale was used to measure depression on selected days at baseline and during chemotherapy and recovery. MAIN RESEARCH VARIABLES: Fatigue and its four dimensions (behavioral/severity, sensory, cognitive/mood, and affective meaning) and depression. FINDINGS: Total fatigue, fatigues four dimension scores, and depression scores changed significantly over time, with the highest scores at day + 7 after transplant. Total fatigue and the four dimension scores were highly and positively correlated with depression, with the highest correlation reported between the affective fatigue dimension and depression. CONCLUSIONS: The findings support the importance of assessing fatigue and depression in patients undergoing autologous PBSCT at baseline, during chemotherapy, and throughout recovery. IMPLICATIONS FOR NURSING: Routine clinical assessment with close observation around day +7 after transplant and patient education about the patterns of fatigue and depression will help the healthcare team to intervene at the appropriate time and may help patients to better manage these symptoms.

Evidence-based practice for fatigue management in adults with cancer: exercise as an intervention.

PURPOSE/OBJECTIVES: To review and summarize the current state of the evidence for exercise as an intervention for cancer-related fatigue and to facilitate application to clinical practice. DATA SOURCES: Articles, abstracts, and practice guidelines published through October 2003. DATA SYNTHESIS: The strength of the evidence of effectiveness of exercise in managing cancer-related fatigue is growing. CONCLUSIONS: All patients with cancer should be encouraged to maintain an optimum level of physical activity during and following cancer treatment. Patients with breast cancer and other selected patients should receive recommendations for moderate exercise programs. Referrals to physical therapy and/or rehabilitation may benefit certain patients, including those with comorbidities or deconditioning. Published multidisciplinary evidence-based guidelines for exercise programs involving patients with cancer are needed. IMPLICATIONS FOR NURSING: Nurses may participate in implementing exercise interventions with patients with cancer in various roles depending on skill and knowledge--from encouraging physical activity to referring patients to physical therapy and/or rehabilitation programs to prescribing and monitoring exercise in certain patient populations.

Exercise decisions within the context of multiple myeloma, transplant, and fatigue.

This constructivist (naturalistic) study explored the decision-making strategies of patients with multiple myeloma who were implementing a home-based exercise program intended to decrease cancer-related fatigue during therapy. A purposive nonprobability sample of 21 patients who were undergoing an aggressive tandem transplant protocol provided data through face-to-face and follow-up telephone interviews. Salient themes derived from the data through content analysis and constant comparison included intrinsic and extrinsic facilitators and barriers that influenced the participants' day-to-day decisions about exercise. Intrinsic factors that facilitated exercise adherence included a belief that exercise would be beneficial, a personal moral/ethical philosophy with regard to honoring a commitment and/or taking responsibility for one's health, and personal strategies such as keeping a routine and setting goals. Extrinsic facilitators included having a good support system and receiving prophylactic epoetin alfa. The experience of chemotherapy and related side effects were intrinsic barriers, while environmental factors such as weather, travel, and employment could be either facilitators or barriers. The delicate balance within the matrix of facilitators and barriers influenced participants' daily decisions about starting, interrupting, stopping, or resuming their workouts.

Individual quality of life of patients undergoing autologous peripheral blood stem cell transplantation.

BACKGROUND: Most quality-of-life (QoL) studies in autologous Peripheral Blood Stem Cell Transplantation (PBSCT) are descriptive and concentrate on symptom severity and functional deficits. The aim of this study is to compare individual QoL (iQoL) with health-related QoL (hrQoL) and functional status of patients before high-dosed therapy/PBSCT. PATIENTS AND METHODS: Multiple Myeloma, non-Hodgkin's Lymphoma and other tumor patients were asked to complete the following measures before high-dosed therapy/PBSCT: the European Organization for Research and Treatment of Cancer (EORTC) Quality-of-life Questionnaire Core 30 (QLQ-C30), and the Schedule for the Evaluation of Individual QoL-Direct Weighting (SEIQoL-DW), a patient-generated instrument which allows the patients to nominate the five most important domains (cues) for their present QoL. The SEIQoL-DW assessment generates: (1) a global QoL score (SEIQoL-INDEX), calculated as Sigma(levelsxweights); (2) the current overall QoL, rated on a visual analogue scale (VAS). Additional measures included demographic data, clinical disease status of remission and Karnofsky's index. RESULTS: Seventy-nine patients completed both types of questionnaires. The QoL domains nominated by the patients were assigned to groups (aggregated cues), the most frequent of which were family (89%), hobbies/pastimes (74%), health (physical, including mobility) (70%), profession/occupation (51%), social life/friends (47%) and marriage/partnership (33%). There was no correlation between the SEIQoL-DW total scores and the EORTC QLQ-C30 scale or the Karnofsky index. CONCLUSION: Individual QoL as assessed by the SEIQoL-DW is unrelated to standard health-status measures such as the EORTC QLQ-C30 or the Karnofsky index. Patient-perceived iQoL in PBSCT seems to depend largely on areas others than health and physical functioning, with the family playing a prominent role.

The CARES-SF used for prospective assessment of health-related quality of life after stem cell transplantation.

OBJECTIVE: By employing the Cancer Rehabilitation and Evaluation System short form (CARES-SF) prospectively we wanted to focus on the rehabilitation needs after high-dose chemotherapy (HDC) and stem cell transplantation, in order to identify problems that should be addressed by health-care professionals during the course of disease and treatment. METHODS: The CARES-SF was administered before and at 2, 6 and 12 months post-transplant to 130 cancer patients treated with HDC and allogeneic (SCT) or autologous stem cell transplantation (ASCT). Physical function scale scores were compared with the corresponding scale of the EORTC QLQ-C30. RESULTS: The SCT group reported significantly better physical function than the ASCT group before transplant on both the CARES-SF (p<0.0001) and the EORTC QLQ-C30 (p<0.01). Almost identical mean CARES-SF scores across groups (SCT: 0.7-1.4, ASCT: 0.8-1.3) were found at the subsequent assessments, consistent with the QLQ-C30 data. Correlations between CARES-SF and QLQ-C30 Physical Function Scales ranged from 0.45 to 0.65. The SCT group had better psychosocial subscale scores (mean 0.4 and 0.5 versus ASCT: 0.7 and 0.8, p < 0.01) at the 6 and 12-month assessments, as well as better satisfaction on the marital subscale ( p=0.01) 6 months post-transplant. Few patients requested specific help: 19% at baseline with 'fear of the cancer progressing' and 9% with 'reduction in physical energy' after 6 and 12 months. CONCLUSION: The CARES-SF detected differences across groups of patients as well as within-patient changes over time. The possibility for patients to express their need for professional assistance renders the CARES-SF appropriate after SCT/ASCT. The sexual, marital and medical interaction subscales in particular address specific issues of relevance for follow-up care, compared with more traditional questionnaires assessing health related quality of life (HRQOL).

Quality of life immediately after peripheral blood stem cell transplantation.

This prospective, longitudinal study investigated the quality of life among patients immediately after undergoing peripheral blood stem cell transplantation. The patients were assessed before transplantation (n = 16), immediately before hospital discharge (n = 10), 2 weeks after hospital discharge (n = 10), and 6 weeks after hospital discharge (n = 8). Patients completed the European Organization for Research and Training Quality of Life Questionnaire-Core 30 and the Ferrans and Powers Quality of Life Index at each assessment point. A brief telephone interview was conducted 6 weeks after hospitalization (n = 7). The study results indicate that patients undergoing peripheral blood stem cell transplantation experience significant appetite loss (P <.01), diarrhea (P <.05), nausea and vomiting (P <.05), and sleep disturbances (P <.01) during the acute posttransplantation period. Other clinically important changes also were identified, so that a general pattern of recovery emerged. These patients reported diminished functional ability, increased symptoms, and poorer quality of life immediately before hospital discharge, with a return to pretransplantation levels by 6 weeks after hospitalization. In contrast, life satisfaction continued to decline 2 weeks after hospitalization, but did improve by 6 weeks. The qualitative data provide further support for this trend.

Quantitative measurement of quality of life in adult patients undergoing bone marrow transplant or peripheral blood stem cell transplant: a decade in review.

PURPOSE/OBJECTIVES: To critically evaluate a decade of quantitative quality-of-life (QOL) measurement in adult patients undergoing bone marrow transplant (BMT) or peripheral blood stem cell transplant (PBSCT). DATA SOURCES: Quantitative research articles published between January 1990 and January 2000 in the nursing and medical literature. DATA SYNTHESIS: QOL measures reported in BMT and PBSCT literature support the multidimensional nature of the construct. The majority of studies used a single instrument to assess QOL. Variations in measurement included use of a single versus multiple instruments to assess QOL, theoretical underpinnings of instruments, and output (overall score, domain scores) provided by the instruments. CONCLUSIONS: A study's purpose, conceptual approach, patient burden, and resources available to the researcher should guide decisions regarding QOL instrumentation. No gold standard exists for assessing QOL in research or clinical practice. IMPLICATIONS FOR NURSING: Nurses can select from a variety of tools to measure QOL in the BMT and PBSCT patient populations. Clinicians must consider the clinical meaningfulness of changes in QOL before implementing changes in their practice.

Optimistic expectations and survival after hematopoietic stem cell transplantation.

An optimistic attitude is hypothesized to be beneficial when facing a life-threatening medical condition. However, the actual relationship of high expectations for treatment success and medical outcome is controversial. Using a prospective cohort of 313 autologous and allogeneic hematopoietic stem cell transplant patients enrolled July 1996 through November 1999, we tested whether patient-reported expectations before transplantation were associated with survival and quality of life following the procedure. Before transplantation, patients with higher expectations that the transplant procedure would go well had better mental and emotional functioning, but similar physical status and medical condition to patients with less optimistic expectations. In the first 2 months after transplantation, optimistic expectations were associated with better survival (92% v 84%; relative risk for mortality 0.45, 95% confidence interval 0.22-0.92; P=.03) controlling for other physical and mental characteristics. However, by 6 months posttransplantation, survival and quality of life were indistinguishable between patients with initially higher and lower expectations. Our data suggest an association between more optimistic expectations and early survival following hematopoietic stem cell transplantation, but this association is not present by 6 months posttransplantation.

The psychosocial aspects of donating blood stem cells: the sibling donor perspective.

The collection of peripheral blood progenitor cells (PBPC) by apheresis has become common in related allogeneic donors. However, the acceptability of the procedure to donors has not been documented. The purpose of this baseline case series study was to evaluate the psycho-social dimensions of apheresis from the perspective of healthy sibling donors and to explore issues surrounding fully informed consent including voluntary donation. At the first interview to discuss donation, 17 consecutive human leucocyte antigens (HLA) identical sibling donors who chose to donate PBPC were recruited to the study. They then completed both scales of the State-Trait Anxiety Inventory. The state scale was completed again immediately before first apheresis. At the end of the final apheresis, the donors were interviewed again by an independent researcher using a standardised questionnaire. All aspects of the procedure were well tolerated, including levels of anxiety and pain. Donors donated even if the relationship with their sibling was poor. However, some areas for improvement were highlighted. Eight (47%) donors were asked to donate by their sibling or another close relative, and this gave them no real volunteer status. Written information was judged important by 11 (65%) donors, but the material used was limited. The possibility of a poor outcome for the recipient was not well understood. The content of the written documentation and the management of confidentiality in terms of donor volunteer status needed to be addressed. A further study regarding the follow-up needs of donors, including those where the outcome is poor, is underway.