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1.  Psychological Status in Childhood Cancer Survivors: A Report From the Childhood Cancer Survivor Study 
Journal of Clinical Oncology  2009;27(14):2396-2404.
Psychological quality of life (QOL), health-related QOL (HRQOL), and life satisfaction outcomes and their associated risk factors are reviewed for the large cohort of survivors and siblings in the Childhood Cancer Survivor Study (CCSS). This review includes previously published manuscripts that used CCSS data focused on psychological outcome measures, including the Brief Symptom Inventory (BSI-18), the Medical Outcomes Survey Short Form-36 (SF-36), the Cantril Ladder of Life, and other self-report questionnaires. Comparisons and contrasts are made between siblings and survivors, and to normative data when available, in light of demographic/health information and abstracted data from the medical record. These studies demonstrate that a significant proportion of survivors report more symptoms of global distress and poorer physical, but not emotional, domains of HRQOL. Other than brain tumor survivors, most survivors report both good present and expected future life satisfaction. Risk factors for psychological distress and poor HRQOL are female sex, lower educational attainment, unmarried status, annual household income less than $20,000, unemployment, lack of health insurance, presence of a major medical condition, and treatment with cranial radiation and/or surgery. Cranial irradiation impacted neurocognitive outcomes, especially in brain tumor survivors. Psychological distress also predicted poor health behaviors, including smoking, alcohol use, fatigue, and altered sleep. Psychological distress and pain predicted use of complementary and alternative medicine. Overall, most survivors are psychologically healthy and report satisfaction with their lives. However, certain groups of childhood cancer survivors are at high risk for psychological distress, neurocognitive dysfunction, and poor HRQOL, especially in physical domains. These findings suggest targeting interventions for groups at highest risk for adverse outcomes and examining the positive growth that remains despite the trauma of childhood cancer.
PMCID: PMC2677925  PMID: 19255309
2.  Sexual Functioning in Young Adult Survivors of Childhood Cancer 
Psycho-oncology  2010;19(8):814-822.
Studies of sexuality or sexual behavior in childhood cancer survivors tend to examine relationships or achievement of developmental milestones but not physiological response to cancer or treatment. The purpose of this study is to (1) identify prevalence and risk factors for sexual dysfunction in childhood cancer survivors, and (2) examine the extent to which sexual dysfunction may be associated with health-related quality of life (HRQOL) and psychosocial outcomes.
Five hundred ninety-nine survivors age 18-39 years completed standardized measures of sexual functioning, HRQOL, psychological distress and life satisfaction. Descriptive statistics assessed prevalence of sexual symptoms. Bivariate analyses identified correlates of sexual symptoms and examined associations between symptoms and HRQOL/psychosocial outcomes.
Most survivors appear to be doing well, although 52% of female survivors and 32% of male survivors reported at least “a little of a problem” in one or more areas of sexual functioning. Mean symptom score for females was more than twice that of males. Sexual symptoms were associated with reporting health problems. Significant associations between sexual functioning and HRQOL outcomes were observed, with gender differences in strengths of association suggesting that males find sexual symptoms more distressing than do females.
While most survivors appear to be doing well in this important life domain, some young adult survivors report sexual concerns. While female survivors may report more sexual symptoms than male survivors, males may experience more distress associated with sexual difficulties. Better specified measures of sexual function, behavior and outcomes are needed for this young adult population.
PMCID: PMC2888926  PMID: 19862693
Sexual functioning; cancer survivor; childhood cancer; quality of life; psychosocial; gender
3.  Longitudinal patterns of psychological distress in adult survivors of childhood cancer 
British Journal of Cancer  2013;109(5):1373-1381.
This study investigated longitudinal patterns of psychological distress in adult survivors of childhood cancer.
Participants included 4569 adult survivors in the Childhood Cancer Survivor Study Cohort (CCSS) who completed the Brief Symptom Inventory-18 on three occasions between 1994 and 2010. Longitudinal latent class analysis was used to identify discrete classes of psychological distress. Predictors of class membership were examined through logistic regression modelling with odds ratios (ORs) and 95% confidence intervals (CIs) reported.
Survivors were a median of 39 years of age and 30 years from diagnosis at the most recent follow-up. Most survivors reported few or no symptoms of distress over time, although subsets of survivors reported persistently elevated (depression: 8.9% anxiety: 4.8% somatisation: 7.2%) or significant increases in distress symptoms over the follow-up period (depression: 10.2% anxiety: 11.8% somatisation: 13.0%). Increasing distress symptoms were predicted by survivor perception of worsening physical health over time (depression: OR=3.3; 95% CI=2.4–4.5; anxiety: OR=3.0; 95% CI=2.2–4.0; somatisation: OR=5.3; 95% CI=3.9–7.4). Persistent distress symptoms were also predicted by survivor perception of worsening physical health over time, as well as by worsening pain and ending analgesic use.
Subgroups of adult survivors are at-risk for chronic distress or significant increases in distress decades following their original cancer diagnosis. Routine screening of psychological distress in adult survivors of childhood cancer is warranted, especially for survivors who experience physical health morbidities.
PMCID: PMC3778287  PMID: 23880828
psychological distress; survivorship; childhood cancer
4.  Marital quality and survivorship: Slowed recovery for breast cancer patients in distressed relationships (Original Article) 
Cancer  2009;115(1):217-228.
Although marital distress has been implicated in difficulties with adjustment to a breast cancer diagnosis, its long-term effects, especially on physical recovery, are unknown.
Longitudinal data from newly diagnosed breast cancer patients (N=100) who were married or cohabiting were used. Patients were assessed post diagnosis and surgery (baseline) and then reassessed every four or six months for the next five years. Women in stable, distressed relationships (n=28) were compared to those in stable, non-distressed relationships (n=72). Stress, health behavior, and health outcomes were examined using mixed-effects modeling.
Overall, marital distress was associated with slowed recovery trajectories and poor outcomes. At baseline both groups had equivalent, high levels of stress, but diverged thereafter. Stress declined more slowly for the Distressed group and by five years it remained significantly higher. Differential reductions in physical activity were also observed. Regarding health, the Distressed group was found to have a slower recovery in performance status and more symptoms/signs of illness and treatment side effects through three years. Finally, all of the effects were observed above and beyond reductions occurring with depressive symptomatology, which was significantly higher in the Distressed group.
Marital distress is not only associated with worse psychological outcomes for breast cancer survivors, but poorer health and a steeper decline in physical activity. These novel data show recovery trajectories for breast cancer survivors to be constrained for those also coping with ongoing difficulties in their marriage.
PMCID: PMC2614459  PMID: 18951520
breast; cancer; survivorship; marital; stress; health; partner; depression
5.  Survivor Centrality Among Breast Cancer Survivors: Implications for Well-Being 
Psycho-oncology  2011;20(5):517-524.
The goal of this research was to examine the extent to which 10-year breast cancer survivors integrated cancer into their self-concept (i.e., survivor centrality), identify predictors of survivor centrality, and determine the relation of survivor centrality to well-being.
Breast cancer survivors (n = 240) were interviewed 10 years following the initial diagnosis. They completed measures of survivor centrality, illness valence (i.e., positive or negative views of illness), and well-being (positive and negative affect, mental and physical functioning, psychological distress, benefit-finding).
There were few predictors of the kinds of women who were more likely to integrate breast cancer into their self-concepts, but survivor centrality was related to engaging in behaviors that suggested survivorship was relevant to women’s daily lives, such as becoming involved in breast cancer activities. Survivor centrality was related to three markers of negative psychological well-being: more negative affect, poorer mental functioning, and greater psychological distress. However, in the case of negative affect and psychological distress, this relation was moderated by illness valence, such that survivor centrality was only related to negative psychological well-being when the illness was viewed in less positive terms.
Women vary in the extent to which they define themselves in terms of the breast cancer experience. Survivor centrality in and of itself is not always indicative of adjustment to disease. When women have a more negative view of being a breast cancer survivor, survivor centrality is more likely to signify potential problems.
PMCID: PMC3013237  PMID: 20878844
breast cancer; survivorship; self-concept; well-being
6.  National estimates of racial disparities in health status and behavioral risk factors among long-term cancer survivors and non-cancer controls 
Cancer causes & control : CCC  2010;21(9):1387-1395.
We examined racial disparities (White, African American, and other race) in health status (self-rated health, lower-body functional limitations, psychological distress, and body mass index [BMI]) and behaviors (smoking, alcohol use, and physical activity) of long-term cancer survivors (≥5 years) when compared to non-cancer controls.
Using 2005–2007 National Health Interview Survey data, we computed adjusted prevalence estimates of health status and behaviors for all six groups, controlling for sociodemographic factors, medical-care access, or presence of other chronic conditions.
The sample included 2,762 (3.6%) survivors and 73,059 controls. Adjusted prevalence estimates for each race were higher for long-term survivors than controls in terms of having fair-poor self-rated health, ≥1 limitation, psychological distress, and higher BMI but were similar between survivors and controls in terms of physical activity, smoking, and alcohol use. Adjusted prevalence estimates for having fair-poor self-rated health were higher for African American survivors than white survivors, lower for psychological distress, physical activity and alcohol use, and similar for smoking and BMI.
With the exception of smoking and limitations, racial differences existed among survivors for all health-status and behavioral measures. Clinicians may play a key role in helping to reduce disparities.
PMCID: PMC3281263  PMID: 20401529
Disparity; Race; Cancer survivor; Behavior; Quality of life
7.  Coping Profiles Common to Older African American Cancer Survivors: Relationships to Quality of Life 
Journal of pain and symptom management  2010;10.1016/j.jpainsymman.2010.04.013.
Cancer survivors employ distinct sets of coping behaviors that vary in their associations with psychological health and quality of life. However, existing research has largely focused on white and middle class subjects.
This study explores whether clusters with differing coping profiles could be identified among older African American cancer survivors and whether these profiles varied on cultural factors and physical, psychological, and relationship well-being.
Four hundred forty-nine older African American cancer survivors recruited from outpatient oncology clinics completed a questionnaire booklet containing the Ways of Helping Questionnaire (WHQ), the Brief Index of Race-Related Stress (IRRS), the Religious Involvement Scale, Mutuality Scale, and the Short Form 12 Health Survey Questionnaire (SF-12). A k-means cluster analysis was conducted using the WHQ.
Four distinct coping profiles were identified and labeled High Coping, Low Encouraging Healthy Behaviors, Low Coping and Strong/Distracting Behaviors. Coping profiles were associated with participant’s gender, age, and living alone. Controlling for these demographic differences, coping profiles were associated with religiosity, experiences with racism, and physical, psychological and relationship well-being.
The findings from this study lend support for examining coping profiles and health outcomes among African American cancer survivors. This research also suggests that these profiles vary on cultural factors. This information should prove useful to researchers as they develop culturally appropriate interventions for this underserved population.
PMCID: PMC3029503  PMID: 20832984
cancer; African Americans; coping profiles; cluster analysis; religious involvement; experienced racism; quality of life
8.  An Exploratory Analysis of Fear of Recurrence among African-American Breast Cancer Survivors 
Fear of recurrence (FOR) is a psychological concern that has been studied extensively in cancer survivors but has not been adequately examined in African-American breast cancer survivors.
This exploratory study describes the extent and nature of FOR in African-American breast cancer survivors. FOR is examined in relation to socio-demographic characteristics, treatment-related characteristics, psychological distress, and quality of life (QOL).
Participants completed questionnaires assessing FOR, psychological distress, QOL, and demographic and treatment characteristics. Pearson r correlations, t tests, and ANOVAs were used to determine the association between FOR and demographic and treatment-related characteristics. Hierarchical multiple regression models were performed to investigate the degree to which FOR dimensions account for the variance in QOL and psychological distress.
Fifty-one African-American breast cancer survivors participated in this study. The mean age of participants was 64.24 (SD = 12.3). Overall fears as well as concerns about death and health were rated as low to moderate. Role worries and womanhood worries were very low. Inverse relationships were observed between age and FOR dimensions. FOR was positively correlated with measures of psychological distress and negatively correlated with QOL. FOR significantly accounted for a portion of the variance in QOL and distress after controlling for other variables.
This study suggests that African-American women in this sample demonstrated some degree of FOR. Results indicate that FOR among African-American breast cancer survivors decreases with age and time since diagnosis and co-occurs with psychological distress as well as diminished quality of life.
PMCID: PMC3760175  PMID: 21915625
Fear of Recurrence; African-American; Breast Cancer Survivors
Psycho-oncology  2006;15(10):898-910.
The long-term psychological impact of pediatric sarcoma is largely unknown. As part of a cross-sectional study examining the late effects of pediatric sarcoma therapy, we examined whether psychological distress or posttraumatic stress symptoms are present in an adult cohort of pediatric sarcoma survivors.
Thirty-four patients participated in the study, an average of 17 years after their treatment ended, each completing the SCID module for Posttraumatic Stress Disorder, Impact of Events Scale, Brief Symptom Inventory (BSI) and a questionnaire assessing sociodemographic variables and psychosocial issues.
Significant persistent psychological distress characterized this cohort of patients. Seventy-seven percent scored in the clinical range on the BSI. Twelve percent met diagnostic criteria for PTSD. Current psychological distress was associated with intrusive thoughts and avoidant behaviors, male gender, employment, difficulty readjusting to work/school after treatment, and enduring worries about health. No differences were found based on age, presence of metastatic disease or time since diagnosis.
This is the first report of a clinical evaluation of psychological distress in a cohort of pediatric sarcoma survivors treated with intensive multimodal cancer therapy. The results suggest that survivors of pediatric sarcoma might be at high risk for adverse psychological outcomes. Appropriate interventions are proposed.
PMCID: PMC2289870  PMID: 16402373
psychological distress; posttraumatic stress; pediatric sarcoma; long-term survivors; intensive treatment; cancer; oncology
10.  Psychological Outcomes and Health Beliefs in Adolescent and Young Adult Survivors of Childhood Cancer and Controls 
Journal of Clinical Oncology  2010;28(12):2002-2007.
The purpose of this study was to compare adolescent and young adult (AYA) pediatric cancer survivors and peers without a history of serious illness on psychological distress, health-related quality of life (HRQOL), health beliefs; examine age at diagnosis and cancer treatment intensity on these outcomes; and examine relationships between number of health problems and the outcomes.
Patients and Methods
AYA cancer survivors (n = 167) and controls (n = 170), recruited during visits to a cancer survivorship clinic and primary care, completed self-report questionnaires of distress, health problems, and health beliefs. For survivors, providers rated treatment intensity and health problems.
There were no statistically significant differences between survivors and controls in psychological distress or HRQOL. Cancer survivors had less positive health beliefs. Survivors diagnosed as adolescents had significantly greater psychological distress and fewer positive health beliefs than those diagnosed earlier. Survivors with the highest level of treatment intensity had greater anxiety and fewer positive health beliefs than those with less intense treatments. Provider report of current health problems related to survivors' beliefs and mental HRQOL only, whereas patient report of health problems correlated significantly with most psychosocial outcomes and beliefs.
AYA cancer survivors did not differ from peers in psychological adjustment but did endorse less adaptive health beliefs. Survivors diagnosed during adolescence and who had more intensive cancer treatments evidenced poorer psychosocial outcomes. Beliefs about health may be identified and targeted for intervention to improve quality of life, particularly when patient perceptions of current health problems are considered.
PMCID: PMC2860405  PMID: 20231679
11.  Psychological Distress and Coping amongst Higher Education Students: A Mixed Method Enquiry 
PLoS ONE  2014;9(12):e115193.
Psychological distress among higher education students is of global concern. Students on programmes with practicum components such as nursing and teacher education are exposed to additional stressors which may further increase their risk for psychological distress. The ways in which these students cope with distress has potential consequences for their health and academic performance. An in-depth understanding of how nursing/midwifery and teacher education students experience psychological distress and coping is necessary to enable higher education providers to adequately support these students.
This mixed method study was employed to establish self-reported psychological distress (General Health Questionnaire), coping processes (Ways of Coping Questionnaire) and lifestyle behaviour (Lifestyle Behaviour Questionnaire) of a total sample (n = 1557) of undergraduate nursing/midwifery and teacher education students in one university in Ireland. Individual interviews (n = 59) provided an in-depth understanding of students experiences of psychological distress and coping.
A significant percentage (41.9%) of respondents was psychologically distressed. The factors which contributed to their distress, included study, financial, living and social pressures. Students used varied coping strategies including seeking social support, problem solving and escape avoidance. The positive relationship between elevated psychological distress and escape avoidance behaviours including substance use (alcohol, tobacco and cannabis) and unhealthy diet is of particular concern. Statistically significant relationships were identified between “escape-avoidance” and gender, age, marital status, place of residence, programme/year of study and lifestyle behaviours such as diet, substance use and physical inactivity.
The paper adds to existing research by illuminating the psychological distress experienced by undergraduate nursing/midwifery and teacher education students. It also identifies their distress, maladaptive coping and the relationship to their lifestyle behaviours. The findings can inform strategies to minimise student distress and maladaptive coping during college and in future professional years.
PMCID: PMC4266678  PMID: 25506825
12.  Long-Term Positive and Negative Psychological Late Effects for Parents of Childhood Cancer Survivors: A Systematic Review 
PLoS ONE  2014;9(7):e103340.
Increasing survival rates in childhood cancer have yielded a growing population of parents of childhood cancer survivors (CCSs). This systematic review compiles the literature on positive and negative long-term psychological late effects for parents of CCSs, reported at least five years after the child's diagnosis and/or two years after the end of the child's treatment. Systematic searches were made in the databases CINAHL, EMBASE, PsycINFO, and PubMed. Fifteen studies, published between 1988 and 2010, from 12 projects were included. Thirteen studies used quantitative methodology, one quantitative and qualitative methodology, and one qualitative methodology. A total of 1045 parents participated in the reviewed studies. Mean scores were within normal ranges for general psychological distress, coping, and family functioning. However, a substantial subgroup reported a clinical level of general psychological distress, and 21–44% reported a severe level of posttraumatic stress symptoms. Worry, disease-related thoughts and feelings, marital strains, as well as posttraumatic growth was reported. Several factors were associated with the long-term late effects, such as parents' maladaptive coping during earlier stages of the childs disease trajectory and children's current poor adjustment. Quality assessments of reviewed studies and clinical implications of findings are discussed and recommendations for future research are presented.
PMCID: PMC4110004  PMID: 25058607
13.  An evaluation of lower-body functional limitations among long-term survivors of 11 different types of cancers 
Cancer  2009;115(22):5329-5338.
We examined potential reasons (sociodemographics, psychological distress, health behavior, chronic health conditions, access to medical care) for increased prevalence of lower-body functional limitations (LBFL) among long-term (≥5 years) cancer survivors.
Using 2005-2007 National Health Interview Survey data, we defined LBFL as reporting difficulty/inability to perform at least 1 of 5 activities (walking 1/4 of a mile; walking up and down 10 steps without rest; standing for 2 hours; stooping, crouching, or kneeling; and lifting 10 lbs). Increased prevalence of LBFL was compared between long-term survivors of each of 11 cancer types reported by ≥50 respondents (n=2,143) and persons without cancer history (controls; n=72,618).
Among cancer survivors, 57.0% had a LBFL versus 26.6% of controls. The unadjusted prevalence of LBFL varied by cancer type, ranging from 44.9% (lymphoma survivors) to 88.8% (lung cancer survivors). Long-term lung (odds ratio [OR]:7.91), uterine (OR:2.41), thyroid (OR:2.27), cervical (OR:1.76), ovarian (OR:1.75), and breast (OR:1.35) cancer survivors had increased odds of reporting a LBFL than controls after adjusting for sociodemographic factors (all p<0.05). Differences in prevalence of arthritis and lower-back pain and in access to medical care explained differences in LBFL prevalence between controls and long-term breast, cervical, ovarian, and uterine cancer survivors. Long-term bladder, colorectal, lymphoma, melanoma, and prostate cancer survivors were equally likely to report a LBFL as controls.
Treatment of arthritis and lower back pain and increasing access to medical care might help reduce the risk of LBFL and improve quality of life among specific long-term cancer survivors.
PMCID: PMC2791371  PMID: 19676109
dysfunction; arthritis; low-back pain; survivors
14.  Sexual Self Schema as a Moderator of Sexual and Psychological Outcomes for Gynecologic Cancer Survivors 
Archives of sexual behavior  2008;38(5):828-841.
Abstract Gynecologic cancer patients are at high risk for emotional distress and sexual dysfunction. The present study tested sexual self schema as an individual difference variable that might be useful in identifying those at risk for unfavorable outcomes. First, we tested schema as a predictor of sexual outcomes,including bodychangestress. Second,we examined schema as a contributor to broader quality of life outcomes, specifically as a moderator of the relationship between sexual satisfaction and psychological statue (depressive symptoms and quality of life). A cross-sectional design was used. Gynecologic cancer survivors (N = 175) 2−10 years post treatment were assessed during routine follow up. In regression analyses controlling for sociodemographic variables, patients' physical symptoms/signs as evaluated by nurses, health status, and extent of partner sexual difficulties, sexual self schema accounted for significant variance in the prediction of current sexual behavior, responsiveness, and satisfaction. Moreover, schema moderated the relationship between sexual satisfaction and psychological outcomes, suggesting that a positive sexual self schema might “buffer” patients from depressive symptoms when their sexual satisfaction is low. Furthermore, the combination of a negative sexual self schema and low sexual satisfaction might heighten survivors' risk for psychological distress, including depressive symptomatology. These data support the consideration of sexual self schema as a predictor of sexual morbidity among gynecologic cancer survivors.
PMCID: PMC2745514  PMID: 18418707
Schema; Sexual dysfunction; Gynecologic cancer; Depression; Quality of life
15.  Coping with interpersonal stress and psychological distress at work: comparison of hospital nursing staff and salespeople 
Hospital nurses frequently experience relationships with patients as stressors in the workplace. Nurses’ coping behavior is one potential buffering factor that can reduce the effects of job stress on their psychological functioning and well-being. In this study, the association between nurses’ strategies for coping with interpersonal stress from patients and their psychological distress was examined. Participants included 204 hospital nurses and 142 salespeople, who were used as a comparison group. Participants completed measures of coping with interpersonal stress and psychological distress. Hospital nurses reported more psychological distress than did salespeople. Moreover, distancing coping was correlated with high psychological distress in both nurses and salespeople, and reassessing coping was correlated with low psychological distress in nurses. For nurses only, constructive coping appeared to be an effective strategy for reducing psychological distress. It is important for nurses to understand the role of constructive coping in nurse–patient communication and interaction.
PMCID: PMC3896321  PMID: 24470781
nurse; relationships with patients; interpersonal stress; coping behavior; job stress
16.  Symptom Distress and Quality of Life in Patients with Advanced Congestive Heart Failure 
Little is known about the burden of illness associated with advanced congestive heart failure (CHF). Understanding the needs of this population requires further information about symptoms and other factors related to quality of life. We studied a convenience sample of 103 community-dwelling patients with New York Heart Association Class III/IV CHF. The primary outcome, quality of life (QOL), was measured with the Multidimensional Index of Life Quality (MILQ). Potential correlates of QOL included overall symptom burden (Memorial Symptom Assessment Scale, MSAS), including global symptom distress (MSAS Global Distress Index, GDI); psychological state (Mental Health Inventory-5, MHI-5); functional status (Sickness Impact Profile, SIP); spirituality (Functional Assessment of Chronic Illness Therapy-Spirituality Scale, FACIT-Spirituality); and co-morbid conditions (Charlson Comorbidity Index). Patients had a mean age of 67.1 years (SD = 12.1); were mostly white (72.8%), male (71.8%), and married (51.5%); and had a mean ejection fraction of 22.3% (SD = 6.8). The most prevalent symptoms were lack of energy (66%), dry mouth (62%), shortness of breath (56%), and drowsiness (52%). Pain was reported by about one-third of patients. For each of these symptoms, high symptom-related distress was reported by 14.1−54.1%. Quality of life was moderately compromised (MILQ composite, median = 56, possible range 12−84). Impairment in quality of life was strongly associated with global symptom distress (MSAS GDI; r = 0.74, P < 0.001); burden of comorbid conditions (r = −0.32, P = 0.002), female sex (r = −0.22, P = 0.03), functional impairment, particularly psychological impairment (r = −0.55, P < 0.001), and poorer psychological well-being (r = 0.68, P < 0.001). In multivariate analyses, impairment in quality of life was significantly related to high symptom distress, poorer psychological well-being, and poor functional mobility (R2 = 0.67; P=0.002 for all). Distressful symptoms related to impaired quality of life included lack of energy (P=0.04), irritability (P=0.03) and drowsiness (P=0.02). Community-dwelling patients with advanced CHF experience numerous symptoms, significant symptom distress, and a compromised quality of life. Overall quality of life was strongly associated with symptom distress, psychological well-being and functional status. A focus on ameliorating prevalent physical symptoms and psychological distress, along with supportive measures that promote functional mobility, may lead to an improvement in the overall quality of life in this patient population.
PMCID: PMC2662445  PMID: 18215495
Congestive heart failure; quality of life; symptom distress
17.  A randomised trial of a psychosocial intervention for cancer patients integrated into routine care: the PROMPT study (promoting optimal outcomes in mood through tailored psychosocial therapies) 
BMC Cancer  2011;11:48.
Despite evidence that up to 35% of patients with cancer experience significant distress, access to effective psychosocial care is limited by lack of systematic approaches to assessment, a paucity of psychosocial services, and patient reluctance to accept treatment either because of perceived stigma or difficulties with access to specialist psycho-oncology services due to isolation or disease burden. This paper presents an overview of a randomised study to evaluate the effectiveness of a brief tailored psychosocial Intervention delivered by health professionals in cancer care who undergo focused training and participate in clinical supervision.
Health professionals from the disciplines of nursing, occupational therapy, speech pathology, dietetics, physiotherapy or radiation therapy will participate in training to deliver the psychosocial Intervention focusing on core concepts of supportive-expressive, cognitive and dignity-conserving care. Health professional training will consist of completion of a self-directed manual and participation in a skills development session. Participating health professionals will be supported through structured clinical supervision whilst delivering the Intervention. In the stepped wedge design each of the 5 participating clinical sites will be allocated in random order from Control condition to Training then delivery of the Intervention. A total of 600 patients will be recruited across all sites. Based on level of distress or risk factors eligible patients will receive up to 4 sessions, each of up to 30 minutes in length, delivered face-to-face or by telephone. Participants will be assessed at baseline and 10-week follow-up. Patient outcome measures include anxiety and depression, quality of life, unmet psychological and supportive care needs. Health professional measures include psychological morbidity, stress and burnout. Process evaluation will be conducted to assess perceptions of participation in the study and the factors that may promote translation of learning into practice.
This study will provide important information about the effectiveness of a brief tailored psychological Intervention for patients with cancer and the potential to prevent development of significant distress in patients considered at risk. It will yield data about the feasibility of this model of care in routine clinical practice and identify enablers and barriers to its systematic implementation in cancer settings.
Trial registration
PMCID: PMC3045358  PMID: 21284838
18.  Mass Fatality Management following the South Asian Tsunami Disaster: Case Studies in Thailand, Indonesia, and Sri Lanka 
PLoS Medicine  2006;3(6):e195.
Following natural disasters, mismanagement of the dead has consequences for the psychological well-being of survivors. However, no technical guidelines currently exist for managing mass fatalities following large natural disasters. Existing methods of mass fatality management are not directly transferable as they are designed for transport accidents and acts of terrorism. Furthermore, no information is currently available about post-disaster management of the dead following previous large natural disasters.
Methods and Findings
After the tsunami disaster on 26 December 2004, we conducted three descriptive case studies to systematically document how the dead were managed in Thailand, Indonesia, and Sri Lanka. We considered the following parameters: body recovery and storage, identification, disposal of human remains, and health risks from dead bodies. We used participant observations as members of post-tsunami response teams, conducted semi-structured interviews with key informants, and collected information from published and unpublished documents.
Refrigeration for preserving human remains was not available soon enough after the disaster, necessitating the use of other methods such as dry ice or temporary burial. No country had sufficient forensic capacity to identify thousands of victims. Rapid decomposition made visual identification almost impossible after 24–48 h. In Thailand, most forensic identification was made using dental and fingerprint data. Few victims were identified from DNA. Lack of national or local mass fatality plans further limited the quality and timeliness of response, a problem which was exacerbated by the absence of practical field guidelines or an international agency providing technical support.
Emergency response should not add to the distress of affected communities by inappropriately disposing of the victims. The rights of survivors to see their dead treated with dignity and respect requires practical guidelines and technical support. Mass fatality management following natural disasters needs to be informed by further field research and supported by a network of regional and international forensic institutes and agencies.
Case studies were conducted to systematically document how the bodies of those killed in the tsunami were managed in Thailand, Indonesia, and Sri Lanka. Many lessons can be learned, though more research is needed.
Editors' Summary
Some 226,408 people died in the tsunami that hit countries across South Asia on 26 December 2004. As well as providing assistance to the living, a crucially important part of the disaster relief effort was the recovery, identification, and disposal of the dead. However, there is very little consensus about the best way to handle and identify large numbers of bodies. Although natural disasters that kill many people occur frequently, most guidelines for the management of large numbers of dead bodies have come out of the experience gained from transport accidents and from terrorist incidents, and these guidelines are not directly relevant; for example, natural disasters often cause many more deaths than transport accidents or terrorist attacks. It is important for survivors that the bodies of the dead are handled with respect and that the dead are identified so that survivors know what has happened to missing relatives. However, at the same time many people are afraid of what the effect of many dead bodies might be on the living; one belief is that dead bodies are a source of disease. Such a belief can lead to the inappropriately rapid burial of bodies before identification has been done.
Why Was This Study Done?
The tsunami of 2004 provided an opportunity to study four different aspects of how the dead were handled in a number of different countries: how the bodies were recovered, how the bodies were identified, how the bodies were disposed of, and what, if any, were the health effects of the large number of bodies on survivors. The authors wanted to then use the results to make recommendations for use in future natural disasters.
What Did the Researchers Do and Find?
The authors interviewed in person, in writing, and by E-mail key people involved in the handling of the dead in three of the countries affected by the tsunami: Thailand (where 8,345 people died), Indonesia (where 165,708 people died), and Sri Lanka (where 35,399 people died). The authors discovered that there were a huge number of people and agencies involved in the handling of the dead; for example, in Indonesia 42 different organizations were involved in recovering bodies.
None of the countries had sufficient refrigerated storage available to store bodies until they could be identified. Some effective alternatives were used, such as temporary burial in shallow graves—where the temperature is lower than in the ambient air—with the intention of exhuming the bodies later for identification. However, many bodies were hurriedly buried in mass graves because they were decomposing; these bodies were almost impossible to identify.
Methods and efficiency of identification varied between and within countries. One hospital in Sri Lanka excelled by systematically photographing all bodies brought in and recording sex, height, and personal effects: 87% of the bodies brought here were identified. But in most areas rates of identification were much lower. It seemed that simple methods of identification were the most useful: photographs taken quickly before the bodies started to decompose, dental records, and personal effects found on the bodies. DNA analysis was only useful for a small number of bodies.
When it came to disposal of the bodies, again procedures differed widely, and in some cases were dictated by religious needs—for example, in some Muslim communities all bodies were buried within 24 hours, making counting and identification of the dead very difficult. Mass graves were often used, but these caused problems; for example, haphazard arrangement of the bodies meant that later exhumation and identification would be impossible.
The authors concluded that there was virtually no health impact of the dead bodies on survivors. Other studies found that there were no epidemics among the surviving population, and that most effects were on those who handled bodies in temporary morgues, where there were the expected variety of sharp-implement injuries and mucosal splashes with body fluids, along with heat stress and dehydration due to overuse of personal protective equipment such as respirators.
What Do These Findings Mean?
How efficiently bodies were handled after the tsunami varied widely across and even within countries. The authors conclude that much of this variety was because of a lack of national or local plans for such mass fatalities, along with a lack of practical field guidelines. There was little coordination of all of the different organizations involved. However, in some places bodies were handled very well. The authors drew on their findings to suggest guidelines for the possible future management of large numbers of bodies, and also suggested that further research should be done. Reassuringly, the large numbers of bodies did not cause problems for the survivors, so in the future survivors should be encouraged to systematically identify the dead rather than rushing to bury them because of fear of disease.
Additional Information.
Please access these Web sites via the online version of this summary at
• The World Heath Organization has a Web page that brings together much information on the tsunami and its aftermath
• News from the United Nations special envoy for the tsunami can be found on its Web site
• An article published by the Pan American Health Organization called “Disaster Myths That Just Won't Die”
• Field guidelines for managing mass fatality natural disasters developed by an international workshop following the tsunami
PMCID: PMC1472696  PMID: 16737348
Limited data are available about the physical and mental functioning of individuals diagnosed and treated for early stage lung cancer. To develop post-treatment guidelines and targeted resources for the growing number of lung cancer survivors, clinically relevant information about longer-term health-related quality of life (HQOL) is needed. The current study examines lung cancer survivors' HQOL and identifies associations between HQOL and demographic, disease and psychosocial risk factors.
A total of 359 individuals diagnosed and surgically treated for Stage IA or IB non-small cell lung cancer completed a post-treatment survey via mail or telephone that included the SF-36v2 as well as demographic, medical, psychological and physical symptom indices. To better understand the impact of lung cancer treatment, we examined age- and gender-adjusted differences in HQOL as compared to a demographically matched sample of older adults, most with a significant smoking history, who participated in a lung cancer screening trial. Risk factors for impairments in HQOL were also identified.
Compared to the screening sample, lung cancer survivors reported lower physical health scores, but did not differ in terms of mental health status. Dyspnea and distressed mood were most associated with HQOL impairments.
Early stage lung cancer survivors are likely to experience mild impairment in physical functioning. They may benefit from management of distressed mood and referral to physical activity and pulmonary rehabilitation programs to promote HQOL outcomes.
PMCID: PMC3470856  PMID: 20462654
quality of life; lung cancer; survivorship
20.  Distress Screening in Chronic Disease: Essential for Cancer Survivors 
Distress is a psychological state that is often observed in patients with chronic disease. Many cancers are considered chronic in nature, with patients experiencing long, disease-free states and intervals of metastatic disease. Distress can negatively affect the biopsychosocial balance in cancer survivors and impede their progress along the cancer trajectory. Distress can also affect medical and psychological outcomes and hinder advancement into long-term survivorship. Distress may contribute to disease progression, although despite research findings, health-care providers seldom screen for indications of persistent or unresolved distress. This article discusses research findings related to the prevalence of distress in multiple chronic diseases. Validated instruments used to screen for distress in cancer survivors, such as the Distress Thermometer and symptom checklist from the National Comprehensive Cancer Network, are reviewed. With the availability of brief and concise instruments to screen for distress, providers have the ability to provide holistic and comprehensive care for cancer survivors. The overall financial impact of cancer-related distress is understudied, although similar psychological studies indicate that prevention or elimination of distress is beneficial. Cancer is a lifelong, chronic disease; patients have ongoing needs and varied sources of distress. As the number of cancer survivors exponentially increases, their psychosocial needs will likewise expand.
PMCID: PMC4093508  PMID: 25032045
21.  Health-Promoting Behaviors of Low-Income Cancer Survivors 
Clinical nurse specialist CNS  2011;25(3):118-124.
The purpose of this study was to explore the health-promoting behaviors of low-income cancer survivors before and after their diagnosis of cancer.
This qualitative study used a purposive sampling strategy to identify low-income, ethnically diverse cancer survivors.
Participants were recruited from an urban outpatient cancer clinic serving only low-income clients.
Thirteen, ethnically diverse low-income cancer survivors participated in 60–90 minute interviews discussing their experience with health-promoting behaviors before and after their diagnosis with cancer, their cancer experience, and their perspectives on being a cancer survivor.
Conventional content analysis of transcripts and field notes by two coders identified words, context, frequency, emphasis, and consistency of participants’ comments. Statements were further examined to identify patterns and main themes and to interpret the meaning of what was said.
Participants described their use of various health-promoting behaviors primarily walking, maintaining a positive mental attitude, and changing their diet. Participants discussed their perspectives on being diagnosed with cancer as well as the meaning of being a cancer survivor. They described spiritual growth through prayer, renewing their faith, maintaining a hopeful outlook, and expressing thankfulness toward God. Participants expressed interested in learning about effective physical exercises, healthy eating, and stress management strategies. Conclusions: Results suggest that low-income cancer survivors engage in various health-promoting behaviors and want to learn more behaviors to use after cancer treatment.
Findings provide useful information for Clinical Nurse Specialists when providing information about health-promoting behaviors for use during and after cancer treatment as well as the meaning of cancer survivor for low-income cancer survivors.
PMCID: PMC3142469  PMID: 21483242
Cancer survivor; health-promoting behaviors; health promotion
22.  Yoga for breast cancer patients and survivors: a systematic review and meta-analysis 
BMC Cancer  2012;12:412.
Many breast cancer patients and survivors use yoga to cope with their disease. The aim of this review was to systematically assess and meta-analyze the evidence for effects of yoga on health-related quality of life and psychological health in breast cancer patients and survivors.
MEDLINE, PsycInfo, EMBASE, CAMBASE, and the Cochrane Library were screened through February 2012. Randomized controlled trials (RCTs) comparing yoga to controls were analyzed when they assessed health-related quality of life or psychological health in breast cancer patients or survivors. Risk of bias was assessed using the Cochrane risk of bias tool. Standardized mean differences (SMD) and 95% confidence intervals (CI) were calculated.
Twelve RCTs with a total of 742 participants were included. Seven RCTs compared yoga to no treatment; 3 RCTs compared yoga to supportive therapy; 1 RCT compared yoga to health education; and 1 RCT compared a combination of physiotherapy and yoga to physiotherapy alone. Evidence was found for short-term effects on global health-related quality of life (SMD = 0.62 [95% CI: 0.04 to 1.21]; P = 0.04), functional (SMD = 0.30 [95% CI: 0.03 to 0.57), social (SMD = 0.29 [95% CI: 0.08 to 0.50]; P < 0.01), and spiritual well-being (SMD = 0.41 [95% CI: 0.08; 0.74]; P = 0.01). These effects were, however, only present in studies with unclear or high risk of selection bias. Short-term effects on psychological health also were found: anxiety (SMD = −1.51 [95% CI: -2.47; -0.55]; P < 0.01), depression (SMD = −1.59 [95% CI: -2.68 to −0.51]; P < 0.01), perceived stress (SMD = −1.14 [95% CI:-2.16; -0.12]; P = 0.03), and psychological distress (SMD = −0.86 [95% CI:-1.50; -0.22]; P < 0.01). Subgroup analyses revealed evidence of efficacy only for yoga during active cancer treatment but not after completion of active treatment.
This systematic review found evidence for short-term effects of yoga in improving psychological health in breast cancer patients. The short-term effects on health-related quality of life could not be clearly distinguished from bias. Yoga can be recommended as an intervention to improve psychological health during breast cancer treatment.
PMCID: PMC3527138  PMID: 22988934
Breast neoplasms; Yoga; Complementary therapies; Quality of life; Psychological health; Meta-analysis; Review
23.  Generalized psychological distress among HIV-infected patients enrolled in antiretroviral treatment in Dilla University Hospital, Gedeo zone, Ethiopia 
Global Health Action  2014;7:10.3402/gha.v7.23882.
Psychological disorders like depression and anxiety are potentially dangerous conditions. In the context of HIV/AIDS, this can influence health-seeking behavior or uptake of diagnosis and treatment for HIV/AIDS, add to the burden of disease for HIV patients, create difficulty in adherence to treatment, and increase the risk of mortality and morbidity. The objective of this study was to assess the prevalence and correlates of generalized psychological distress among HIV-infected subjects on antiretroviral treatment (ART).
An institution-based cross-sectional study was conducted. Interviews were conducted with 500 patients initiating ART at Dilla Referral Hospital. Generalized psychological distress was measured using the Hospital Anxiety and Depression Scale (HADS). A cutoff score ≥19 was used to identify possible cases of patients with generalized psychological distress. Multivariable logistic regression analysis using SPSS Version 20 was performed to identify factors associated with psychological distress.
The prevalence of generalized psychological distress among the population of this study was 11.2% (HADS≥19). Factors independently associated with generalized psychological distress were moderate stress (OR=6.87, 95% CI 2.27–20.81), low social support (OR=10.17, 95% CI 2.85–36.29), number of negative life events of six and above (OR=3.99, 95% CI 1.77–8.99), not disclosing HIV status (OR=5.24, 95% CI 1.33–20.62), and CD4 cell count of <200 cells/mm3 (OR=1.98, 95% CI 0.45–0.83) and 200–499 cells/mm3 (OR=3.53, 95% CI 1.62–7.73).
This study provides prevalence of psychological distress lower than the prevalence of common mental disorders in Ethiopia and comparable to some other studies in sub-Saharan Africa. The findings are important in terms of their relevance to identifying high-risk groups for generalized psychological distress and preventing distress through integrating mental health services with HIV/AIDS care and support program.
PMCID: PMC4030443  PMID: 24852246
psychological distress; distress; HIV; Ethiopia; Dilla University Referral Hospital
24.  The importance of social support in the associations between psychological distress and somatic health problems and socio-economic factors among older adults living at home: a cross sectional study 
BMC Geriatrics  2012;12:27.
Little is known of the importance of social support in the associations between psychological distress and somatic health problems and socio-economic factors among older adults living at home. The objectives of the present study were to investigate the associations of social support, somatic health problems and socio-economic factors with psychological distress. We also examined changes in the association of somatic health problems and socio-economic factors with psychological distress after adjusting for social support.
A random sample of 4,000 persons aged 65 years or more living at home in Oslo was drawn. Questionnaires were sent by post, and the total response was 2,387 (64%). Psychological distress was assessed using Hopkins Symptom Checklist (HSCL-10) and social support with the Oslo-3 Social Support Scale (OSS-3). A principal component analysis (PCA) included all items of social support and psychological distress. Partial correlations were used, while associations were studied by logistic regression.
After adjusting for socio-demographics and somatic health problems, we reported a statistically significant association between psychological distress and social support: “Number of close friends”, OR 0.61; 95% CI 0.47-0.80; “Concern and interest”, OR 0.68; 95% CI 0.55-0.84. A strong association between lack of social support and psychological distress, irrespective of variables adjusted for, indicated a direct effect. The associations between psychological distress and physical impairments were somewhat reduced when adjusted for social support, particularly for hearing, whereas the associations between somatic diagnoses and psychological distress were more or less eliminated. Income was found to be an independent determinant for psychological distress.
Lack of social support and somatic health problems were associated with psychological distress in elders. Social support acted as a mediator, implying that the negative effect of somatic health problems, especially hearing, on psychological distress was mediated by low social support. We hypothesize that physical impairments reduced social support, thereby increasing psychological distress to a greater extent than the selected diagnoses. The combination of poor social support, poor somatic health and economic problems may represent a vulnerable situation with respect to the mental health of older persons. Free interventions that highlight social support should be considered in mental health promotion.
PMCID: PMC3464708  PMID: 22682023
Older adults; Social support; Psychological distress; Somatic health; Social inequality
25.  Barriers to Mental Health Service Use among Hematopoietic Stem Cell Transplant Survivors 
Bone marrow transplantation  2009;45(3):570-579.
This study examined barriers to mental health service use and their demographic, medical, and psychosocial correlates among hematopoietic stem cell transplant (HSCT) survivors. A sample of 253 HSCT survivors who were 1- to 3-years post-transplant completed measures of demographic, physical, psychological, and social characteristics as well as a newly modified measure of barriers to mental health service use. Only 50% of distressed HSCT survivors had received mental health services. An exploratory factor analysis of the barriers to mental health service use scale yielded four factors: Scheduling Barriers, Knowledge Barriers, Emotional Barriers, and Illness-related Barriers. Patients with higher social constraints (perceived problems discussing the illness experience with significant others) reported higher levels of all four types of barriers. General distress and transplant-related posttraumatic stress symptoms were positively associated with emotional, knowledge, and illness-related barriers to mental health service use, whereas physical and functional well-being were inversely associated with these barriers. Having more knowledge barriers and more emotional barriers predicted a lower likelihood of receiving mental health services, as did lower levels of education and general distress. Results suggest that a significant number of HSCT survivors may benefit from education about mental health services that is tailored to individual barriers.
PMCID: PMC2866642  PMID: 19597417
hematopoietic stem cell transplantation; cancer survivorship; barriers; mental health services; psychological

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