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1.  Resilience Among Patients Across the Cancer Continuum: Diverse Perspectives 
Each phase of the cancer experience profoundly affects patients’ lives. Much of the literature has focused on negative consequences of cancer; however, the study of resilience may enable providers to promote more positive psychosocial outcomes before, during, and after the cancer experience. The current review describes the ways in which elements of resilience have been defined and studied at each phase of the cancer continuum. Extensive literature searches were conducted to find studies assessing resilience during one or more stages of the adult cancer continuum. For all phases of the cancer continuum, resilience descriptions included preexisting or baseline characteristics, such as demographics and personal attributes (e.g., optimism, social support), mechanisms of adaptation, such as coping and medical experiences (e.g., positive provider communication), as well as psychosocial outcomes, such as growth and quality of life. Promoting resilience is a critical element of patient psychosocial care. Nurses may enable resilience by recognizing and promoting certain baseline characteristics and optimizing mechanisms of adaptation.
PMCID: PMC4002224  PMID: 24476731
resilience; cancer; adaptation cancer screening; cancer survivorship; end-of-life care; palliative care
2.  Sexuality after Hematopoietic Stem Cell Transplantation 
PMCID: PMC2691724  PMID: 19197175
3.  Development and Implementation of an Internet-Based Survivorship Care Program for Cancer Survivors Treated with Hematopoietic Stem Cell Transplantation 
Journal of Cancer Survivorship  2011;5(3):292-304.
The internet provides a widely accessible modality for meeting survivorship care needs of cancer survivors. In this paper we describe the development and implementation of an internet site designed as a base from which to conduct a randomized controlled trial to meet psycho-educational needs of hematopoietic stem cell transplantation (HSCT) survivors.
A cross-disciplinary team designed, wrote content and programmed an internet site for online study registration, consent, assessment, and study implementation. All 3–18 year survivors of HSCT for hematologic malignancy treated at one transplant center were approached by mail for participation. All study activities could be conducted without study staff contact. However, participants had options for phone or email contact with study staff as desired.
Of 1775 participants approached for the study, 775 (58% of those eligible) consented and completed baseline assessment. Mean age was 51.7 (SD=12.5, age range 18–79), with 56% male. 57% required staff contact one or more times; a majority were for minor technical issues or delays in completion of enrollment or baseline assessment.
This study demonstrated the potential for providing internet-based survivorship care to long-term survivors of HSCT. Although building a survivorship internet site requires a team with diverse expertise, once built, these resources can be implemented rapidly with large numbers of survivors.
Implications for Cancer Survivors
While internet-based services will not meet all the needs of cancer survivors, this methodology represents an important modality for augmenting onsite clinical services as a method for meeting psycho-educational, information and resource needs of cancer survivors.
PMCID: PMC3260882  PMID: 21544671
Cancer survivors; internet; website; randomized controlled trial; survivorship care plan; distress; depression; fatigue
4.  Measuring Musculoskeletal Symptoms in Cancer Survivors Who Receive Hematopoietic Cell Transplantation 
Journal of Cancer Survivorship  2010;4(3):225-235.
Beyond documentation of high prevalence rates, research has not examined the qualities and characteristics of musculoskeletal symptoms in cancer survivors, possibly because measures have not been validated specifically for the assessment of these symptoms in survivors. We report here on a new measure of muscle and joint symptoms for survivors of hematologic malignancies and hematopoietic cell transplantation (HCT).
In a cross-sectional design, 130 adults, 5-20 years after HCT, completed patient-reported outcomes. Assessment included musculoskeletal symptoms on the Muscle and Joint Measure (MJM), as well as health-related quality of life and treatments.
Principal components analysis using promax rotation revealed four subscales for the MJM with item factor loadings above 0.50: muscle aches or stiffness (myalgias), joint pain, stiffness or swelling (arthralgias), muscle cramps and muscle weakness. Variance explained by the total score was 77%. Internal consistency reliabilities of the subscales and total score ranged from 0.86 to 0.93. Validity was confirmed by correlations with the Short Form-36 bodily pain, physical function and vitality subscales, the Fatigue Symptom Inventory, and the Symptom Checklist-90-R depression (all P<.001).
Musculoskeletal symptoms in survivors who received HCT can be measured reliably and validly with the MJM. The measure requires testing to establish its psychometric properties with other diagnostic and treatment groups.
Implications for Cancer Survivors
The MJM has potential research and clinical value for addressing the musculoskeletal symptoms of survivors. The measure may assist with examining the mechanisms as well as treatments for these symptoms, which are among the most prevalent in long-term cancer survivors.
PMCID: PMC3288113  PMID: 20454867
Cancer survivors; musculoskeletal; symptoms; myalgias; arthralgias; muscles; joints; measurement
5.  Measuring social activities and social function in long-term cancer survivors who received hematopoietic stem cell transplantation 
Psycho-oncology  2010;19(5):462-471.
Cancer survivors report deficits in social functioning even years after completing treatment. Commonly used measures of social functioning provide incomplete understanding of survivors’ social behavior. This study describes social activities of survivors and evaluates the psychometric properties of the Social Activity Log (SAL) in a cohort of long-term survivors of hematopoietic stem cell transplantation (HSCT) for cancer.
One hundred two 5–20 year survivors completed the SAL, Short Form-36 Health Survey (SF-36), and other patient reported outcomes. Principal components analysis determined the factor structure of the SAL along with correlations and regressions to establish validity.
Principal component analysis yielded three factors in the SAL: “non-contact events” (eg, telephone calls), “regular events” (eg, played cards),” and “special events” (eg, concerts), which explained 59% of the total variance. The SAL possessed good internal consistency (Cronbach’s α = 0.82). SF-36 social function and SAL were moderately correlated (r = .31). In linear regressions, physical function and depression explained 16% of the variance in the SAL (P<.001), while physical function, depression and fatigue predicted 55% of the variance in SF-36 social function (P<.001).
Results support the use of the SAL as a measure of social activity in cancer survivors who received HSCT. Whereas the SAL is designed to measure social behaviors, SF-36 social function assesses subjective experience and is more strongly associated with depression and fatigue. The SAL appears to be a promising tool to understand the behavioral social deficits reported by long-term survivors of cancer.
PMCID: PMC3114555  PMID: 19358230
Social activity; cancer survivor; social function; hematopoietic stem cell transplantation; oncology
6.  Marital adjustment, satisfaction and dissolution among hematopoietic stem cell transplant patients and spouses: A prospective, five-year longitudinal investigation 
Psycho-oncology  2010;19(2):190-200.
To examine the trajectory of marital adjustment, satisfaction, and dissolution among 121 hematopoietic stem cell transplant (HSCT) couples – as a function of role (patient or spouse) and gender.
Prospective, longitudinal design. Participants completed the Dyadic Adjustment Scale at six time points: pre-transplant (4–7 days after beginning medical workup prior to starting transplant), 6 months post-transplant, and 1, 2, 3 and 5 years post-transplant. They also reported on marital status over time.
Participants ranged in age from 23–68 (52% female patients and 48% female spouses). Ninety-eight patients received an allogeneic transplant; 23 received an autologous transplant. Marital dissolution was uncommon (4 divorces since the transplant among 55 participating 5-year survivors, 7%). Dyadic satisfaction was stable over time for both male and female patients and male spouses, but not for female spouses who reported reductions in satisfaction at all time points relative to baseline.
Couples were by and large resilient. However, caregiver-specific gender differences indicate an increased risk for relationship maladjustment and dissatisfaction among female spouses and ultimately, female spouse/ male patient couples.
PMCID: PMC2818001  PMID: 19189319
caregiver; marital satisfaction; gender; hematopoietic stem cell transplant; oncology; cancer
7.  A Person-Focused Analysis of Resilience Resources and Coping in Diabetes Patients 
This study investigated the resilience resources and coping profiles of diabetes patients. A total of 145 patients with diabetes completed a questionnaire packet including two measurements of coping (COPE and Coping Styles questionnaires), and personal resources. Glycosylated hemoglobin (HbA1c) was also assessed. Resilience was defined by a factor score derived from measures of self-esteem, self-efficacy, self-mastery, and optimism. All of the maladaptive coping subscales were negatively associated with resilience (r's range from −.34 to −.56, all p's <.001). Of the adaptive coping subscales, only acceptance, emotional support, and pragmatism were positively associated with resilience. The upper, middle, and lower tertiles of the resilience factor were identified and the coping profiles of these groups differed significantly, with low resilience patients favoring maladaptive strategies much more than those with high or moderate resilience resources. Resilience groups did not differ in HbA1c levels; correlation coefficients of the coping subscales with HbA1c were explored. This study demonstrates a link between maladaptive coping and low resilience, suggesting that resilience impacts one's ability to manage the difficult treatment and lifestyle requirements of diabetes.
PMCID: PMC2880488  PMID: 20526415
Diabetes; Resilience; Coping; HbA1c
8.  The role of resilience on psychological adjustment and physical health in patients with diabetes 
British journal of health psychology  2007;13(Pt 2):311-325.
This study used a longitudinal design to investigate the buffering role of resilience on worsening HbA1c and self-care behaviours in the face of rising diabetes-related distress.
A total of 111 patients with diabetes completed surveys and had their glycosylated hemoglobin (HbA1c) assessed at baseline and 1-year follow-up. Resilience was defined by a factor score of self-esteem, self-efficacy, self-mastery, and optimism. Diabetes-related distress and self-care behaviours were also assessed.
Baseline resilience, diabetes-related distress, and their interaction predicted physical health (HbA1c) at 1-year. Patients with low, moderate, and high resilience were identified. Those with low or moderate resilience levels showed a strong association between rising distress and worsening HbA1c across time (r=.57, .56, respectively). However, those with high resilience scores did not show the same associations (r=.08). Low resilience was also associated with fewer self-care behaviours when faced with increasing distress (r= −.55). These correlation coefficients remained significant after controlling for starting points.
In patients with diabetes, resilience resources predicted future HbA1c and buffered worsening HbA1c and self-care behaviours in the face of rising distress levels.
PMCID: PMC2899486  PMID: 17535497
9.  How Does Anger Coping Style Affect Glycemic Control in Diabetes Patients? 
Although various forms of anger have been found to influence the psychological and physical health in many chronic illness populations, little is known about the effects of anger in diabetes patients.
Associations between anger coping style, diabetes-related psychological distress, and glycosylated hemoglobin (HbA1c) were examined in 100 diabetes patients.
Participants completed the Problem Areas in Diabetes and Coping Styles questionnaires, and had HbA1c assessments at study entry (Time 1=T1), six months (T2), and 12 months after T1 (T3).
Linear regression analyses revealed T1 anger coping associated with T3 HbA1c (β=.22, p<.05) but T1 HbA1c did not associate with T3 anger coping (β=.13, p=NS). After controlling for significant covariates (of gender, age, education, type and duration of diabetes), regression analyses revealed that T2 diabetes-related psychological distress partially mediated this association.
These results suggested that higher levels of anger coping may promote poorer HbA1c in diabetes patients by provoking greater diabetes-related distress. Areas of future research on this topic are discussed.
PMCID: PMC2900155  PMID: 18696309
anger coping; psychological distress; glycemic control; diabetes

Results 1-9 (9)