Pain/distress during pediatric cancer treatments has substantial psychosocial consequences for children and families. We examined relationships between parents’ caregiving self-efficacy, parents’ affect in response to their children’s cancer-related treatment procedures, and parents’ symptoms of post-traumatic stress at follow-up.
Participants were 75 pediatric cancer patients and parents. On the day of each of three procedures (i.e., port-start, lumbar puncture, or bone marrow aspiration), parents rated their self-efficacy for six caregiving goals. Parents also self-reported their negative affect (i.e., state anxiety, negative mood, and distress) in response to each procedure. Three months after the last procedure, parents reported their level of post-traumatic stress symptoms (PTSS).
Higher parent self-efficacy about keeping children calm before treatment and/or keeping children calm during the procedure was associated with lower state anxiety. Self-efficacy for keeping the child calm during procedures was significantly correlated with distress in parents at the time of procedures, and self-efficacy for keeping the child calm before procedures was significantly correlated with PTSS. All three negative affect measures significantly mediated the effects of parents’ caregiving self-efficacy for both goals on parents’ PTSS 3 months later.
Parents’ caregiving self-efficacy influences their immediate and longer-term distress reactions to their children’s treatment procedures. These findings provide a more nuanced understanding of how parents’ cognitions contribute to their ability to cope with their children’s treatment and suggest the benefit of an intervention that targets parents’ procedure-specific caregiver self-efficacy.
Although people with cancer want and need information from their oncologists, patients and oncologists often disagree about what information was discussed during clinical interactions. Most patients have companions present during oncology visits; we investigated whether companions process information more accurately than patients. Specifically, we examined whether patients and companions differed in agreement with oncologists about what was discussed. We also investigated the effect of topic on agreement and patient/companion self-reported understanding of discussions.
Patients with companions were invited to participate on first visits to a cancer center in Detroit, Michigan. Patients, companions, and oncologists independently completed questionnaires immediately following visits. Participants were asked whether five topics were discussed (diagnosis, prognosis, metastasis, treatment/treatment goals, and side effects), and if discussed, what oncologists said. Participants were also asked to estimate their own and each other’s understanding of discussions.
A total of 66 patient-companion-oncologist triads participated. Agreement was higher regarding whether topics were discussed than what oncologists said. Agreement did not differ by dyad type. Patients, companions, and oncologists were equally likely to be the source of triadic disagreements. Agreement was high about diagnosis (> 90%), but much lower about other topics, particularly side effects. Patients and companions reported greater understanding of discussions than oncologists estimated and more accurately estimated each other’s understanding than did oncologists.
Companions and patients showed similar levels of agreement with oncologists about what they discussed during visits. Interventions are needed to improve communication of information to both patients and companions, especially about particular topics.
patient-physician communication; oncology; information exchange; family
Too few cancer patients and survivors receive evidence-based interventions for mental health symptoms. This review examines the potential for Internet interventions to help fill treatment gaps in psychosocial oncology and presents evidence regarding the likely utility of Internet interventions for cancer patients.
The authors examined available literature regarding Internet interventions tailored to cancer patients’ mental health needs, and reviewed elements of Internet interventions for mental health relevant to advancing psycho-oncology Internet intervention research. Recommendations for research methods for Internet interventions are described.
Relatively few rigorous studies focusing on mental health of cancer patients have been conducted online. A growing body of evidence supports the efficacy, accessibility, and acceptability of mental health Internet interventions for a variety of general and medical patient populations. The authors present recommendations and guidelines to assist researchers in developing, testing, and disseminating Internet interventions for cancer patients and survivors, to manage and improve their mental health. Issues unique to Internet interventions—including intervention structure, customization, provider interaction, and privacy and confidentiality issues—are discussed. These guidelines are offered as a step toward establishing a set of “best practices” for Internet interventions in psycho-oncology, and to generate further discussion regarding the goals of such interventions and their place in cancer care.
Internet interventions have the potential to fill an important gap in quality cancer care by augmenting limited available mental health services. These interventions should be developed in a manner consistent with best practices and must be empirically tested and validated.
cancer; oncology; intervention studies; Internet; depression; anxiety; quality of life; research methods; Internet intervention
Thirty years after the origin of the field of psycho-oncology, limited data exist about the work practices of professionals providing psychosocial care to children with cancer and their families.
A survey was designed to assess training, work environment, theoretical orientation, services provided, sub-specialty areas or areas of special interest, satisfactions, challenges and continuing education needs of pediatric psycho-oncologists. Members of national and international psycho-oncology organizations were invited to participate in the web-based survey.
786 professionals from 63 countries responded. The sample consisted mostly of psychologists (41%), physicians (20%), and social workers (14%). Approximately half of the participants worked in a designated psycho-oncology unit. Psychologists and social workers provided the majority of psychosocial services. Individual sessions with parents were most common (42%), followed by sessions with children (41%), survivors (36%), families (31%) and siblings (25%). Therapies provided include CBT (50%), relaxation (43%), psychodynamic psychotherapy (27%), play therapy (26%), and imagery (23%). Two-thirds report having appropriate supervision; 37% conduct research; only half feel their salary is appropriate. Differences in therapeutic modalities were found by country. Clinicians desire training on clinical interventions, improving communication with medical staff, research and ethics.
An international cohort of clinicians providing pediatric psycho-oncology services perform a wide variety of tasks, use a range of therapeutic approaches and report considerable work satisfaction. Problem areas include professional inter-relations, inadequate supervision and needs for additional, specialized training. Opportunity exists for global collaboration in pediatric psycho-oncology research and practices to enhance clinical effectiveness and reduce professional isolation.
Pediatric; Psycho-oncology; Childhood Cancer; Training; Professional rewards; Clinical Challenges
Patient Navigation (PN) is a method for addressing racial-ethnic and socioeconomically based disparities in cancer-related care. Patient navigators provide logistic and emotional support to underserved patients to facilitate successful completion of diagnostic and treatment care. Yet, little is known about patient satisfaction with the relationship with a navigator due to a dearth of instruments measuring satisfaction.
To validate the Patient Satisfaction with Interpersonal Relationship with Navigator (PSN-I) measure for patients undergoing diagnostic and/or therapeutic cancer care.
We administered the PSN-I to 783 participants from the nine different sites of the National Cancer Institute sponsored Patient Navigation Research Program. We evaluated the latent structure and internal consistency of the PSN-I using principal components analysis (PCA) and Cronbach coefficient alpha (α) respectively. We used correlation analyses to examine divergence and convergence of the PSN-I with the Patient Satisfaction with Cancer-Related Care (PSCC), the Rapid Estimate of Adult Literacy in Medicine (REALM) Long Form, and patients’ demographics.
The PCA revealed a coherent set of items that explicates 76.6% of the variance in PSN-I. Reliability assessment revealed high internal consistency (α ranging from 0.95 to 0.96). The PSN-I had good face validity, as well as convergent and divergent validities as indicated by moderate correlations with score on the PSCC (all ps < 0.0001) and non-significant correlations with primary language, marital status, and scores on the REALM-Long Form (all ps > 0.05).
The PSN-I is a valid and suitable measure of satisfaction with a patient navigator for the present sample.
Few studies have used rapid screening instruments to document the prevalence of distress among metastatic breast cancer patients. This study used the one-item Distress Thermometer (DT) to assess distress in this population. Anxiety and depressive symptoms, sleep problems, fatigue, and mental health service use were assessed for patients who met the cutoff on the DT for probable distress (score ≥ 4).
A total of 173 metastatic breast cancer patients rated their distress on the DT. Respondents who met study eligibility criteria (n = 90), including a score > 4 on the DT, completed a telephone survey one week later that assessed anxiety, depressive symptoms, sleep problems, and fatigue. Associations of study outcomes with demographic and medical characteristics were computed.
Sixty percent of the 173 patients met the cutoff for probable distress on the DT. Meeting this cutoff was not associated with age, ethnicity, time since diagnosis, or medical treatments. The majority (61%) of respondents who were classified as distressed on the DT reported clinically significant anxiety or depressive symptoms one week later. On average, these patients also showed significant fatigue and sleep disturbance, with 70% reporting decrements in sleep quality. Only 29% of patients with significant anxiety or depressive symptoms accessed mental health services.
Results point to a high prevalence of distress, sleep problems, and fatigue across demographic and medical subgroups of metastatic breast cancer patients. A rapid one-item screening tool may be used to identify patients with a potential need for psychosocial assessment and intervention.
metastatic breast cancer; oncology; sleep; fatigue; psychological distress; mental health services
Although a variety of intervention methods have been used to promote Pap test screening among ethnic minority women in the US, the effectiveness of such interventions is unclear. We performed a meta-analysis to examine the overall effectiveness of these interventions in increasing Pap test use by ethnic minority women in the US.
A search of databases (MEDLINE, Cumulative Index to Nursing and Allied Health Literature, PsycINFO, and Science Citation Index-Expanded) and review articles for articles published between 1984 and April 2009 identified 18 randomized and nonrandomized controlled trials. The primary study outcome was the difference in the proportion of Pap tests between the treatment and comparison groups.
The pooled mean weighted effect size (d) for the 18 studies was 0.158 (95% confidence interval [CI]=0.100, 0.215), indicating that the interventions were effective in improving Pap test use among ethnic minority women. Among the intervention types, access enhancement yielded the largest effect size (0.253 [95% CI=0.110, 0.397]), followed by community education (0.167 [95% CI=0.057, 0.278]) and individual counseling or letters (0.132 [95% CI=0.069, 0.195]). Combined intervention effects were significant for studies targeting Asian (0.177 [95% CI=0.098, 0.256]) and African American women (0.146 [95% CI=0.028, 0.265]), but not Hispanic women (0.116 [95% CI=−0.008, 0.240]).
Pap test use among ethnic minority women is most likely to increase when access-enhancing strategies are combined. Further research is needed to determine whether more tightly controlled trials of such interventions might reveal an improved rate of cervical cancer screening in Hispanic women as well.
Pap test; ethnic minority; women; meta-analysis
To develop and evaluate a new instrument that measures aspects of long-term survivorship not measured by existing tools.
In qualitative interviews, 47 long-term cancer survivors (LTS) detailed ways that cancer has impacted their lives. Content analysis resulted in the creation of 325 candidate items for inclusion in a new Impact of Cancer (IOC) instrument. Following expert review, item reduction and pilot testing, 81 items were administered with other established health status and quality of life (QOL) instruments to 193 LTS of breast, prostate, colorectal cancers and lymphoma. Internal consistency reliability and validity of newly-derived scales was assessed.
Factor analysis of items using a priori QOL domains resulted in the derivation of ten new and specific subscales: health awareness, body changes, health worries, positive and negative self-evaluation, positive and negative life outlook, social life interferences, relationships, and meaning of cancer. Internal consistency measurements for these subscales ranged from 0.67 to 0.89. Expected associations within and among the IOC subscales and standardized measures of health status and QOL were observed, as were some unexpected findings.
Psychometric analysis indicated that this initial version of the Impact of Cancer instrument measures distinct and relevant constructs for LTS. Future work is necessary to confirm the factor structure, responsiveness and further validation of the instrument.
Cancer survivors; Instrument development; Psychometric testing; Quality of life
One of the most common acute side effects of breast cancer radiotherapy is treatment induced skin changes, referred to as skin toxicity. Yet no research to date has focused expressly on skin toxicity-related quality of life in breast cancer radiotherapy patients. Therefore, our aim was to use qualitative approaches to better understand the impact of skin toxicity on quality of life.
Semi-structured interviews were conducted with 20 women (Stage 0-III breast cancer), during their last week of external beam radiotherapy. Each interview was transcribed verbatim, and thematic analysis was performed.
Three themes were identified based on the interview responses: First, skin changes affect multiple dimensions of quality of life. They cause physical discomfort, body image disturbance, emotional distress, and impair both day-to-day functioning and satisfaction with radiation treatment. Second, individual differences affect women’s experiences. Generally African-American women, younger women, women who are not currently in a relationship, women who are being treated during the summer, and women who are more invested in their appearance are more distressed by skin toxicity. Third, women use a variety of symptom management strategies including self-medication, complementary/alternative medicine approaches, and psychological strategies.
Implications of results are: 1) Skin toxicity affects numerous dimensions of quality of life, and assessment approaches and psychosocial interventions should address this; 2) individual differences may affect the experience of skin toxicity, and should be considered in treatment and education approaches; and 3) participants’ own creativity and problem-solving should be used to improve the treatment experience.
breast neoplasms; oncology; radiotherapy; radiodermatitis; qualitative
Mortality from mouth and throat cancer (MTC) is higher among Black Americans than White Americans partially because of late stage detection through screening. The disparity in mortality is particularly problematic among Black Americans living in rural areas who have limited access to preventative resources. Our study explored barriers to screening for MTC among Black Americans.
We conducted nine focus groups among rural Black Americans age 40 years and older (N = 80).
Content coding of the transcripts of the focus groups revealed three primary barriers to screening. Lack of knowledge (e.g., not knowing about MTC and not knowing MTC symptoms) accounted for 31.8% of all barriers mentioned, lack of resources (e.g., lack of money and health insurance) accounted for 25.0% of all barriers mentioned, and fear (e.g., fear of screening and diagnosis) accounted for 22.9% of all barriers mentioned.
We placed these barriers within the Theory of Planned Behavior and conclude that interventions aimed at increasing MTC screening among rural Black Americans should first focus on changing people's attitudes about screening by increasing knowledge about MTC and reducing fear.
This study examines the relationships between methods of coping with advanced cancer, completion of advance care directives, and receipt of intensive, life-prolonging care near death.
The analysis is based on a sample of 345 patients interviewed between January 1, 2003, and August 31, 2007, and followed until death as part of the Coping with Cancer Study, an NCI/NIMH-funded, multi-site, prospective, longitudinal, cohort study of patients with advanced cancer. The Brief COPE was used to assess active coping, use of emotional-support, and behavioral disengagement. The Brief RCOPE was used to assess positive and negative religious coping. The main outcome was intensive, life-prolonging care near death, defined as receipt of ventilation or resuscitation in the last week of life.
Positive religious coping was associated with lower rates of having a living will (AOR=0.39, p=0.003) and predicted higher rates of intensive, life-prolonging care near death (AOR, 5.43; p<0.001), adjusting for other coping methods and potential socio-demographic and health status confounds. Behavioral disengagement was associated with higher rates of DNR order completion (AOR, 2.78; p=0.003) and predicted lower rates of intensive life-prolonging care near death (AOR, 0.20; p=0.036). Not having a living will partially mediated the influence of positive religious coping on receipt of intensive, life-prolonging care near death.
Positive religious coping and behavioral disengagement are important determinants of completion of advance care directives and receipt of intensive, life-prolonging care near death.
coping; cancer; oncology; advance care planning; end-of-life care
Insomnia is a common complaint among cancer survivors. Fortunately, cognitive-behavioral therapy for insomnia (CBT-I) has been shown to be an effective treatment in this population. However, it is rarely implemented given its limited availability. To address this barrier, we examined the ability of an easily-accessible online CBT-I program to improve insomnia symptoms in cancer survivors.
Twenty-eight cancer survivors with insomnia were randomly assigned to either an Internet insomnia intervention (n=14) or to a waitlist control group (n=14). The online program, Sleep Healthy Using the Internet, delivers the primary components of CBT-I (sleep restriction, stimulus control, cognitive restructuring, sleep hygiene, and relapse prevention). Pre- and post-assessment data were collected via online questionnaires and daily sleep diaries.
Participants in the Internet group showed significant improvements at post-assessment compared to those in the control group in overall insomnia severity (F1,26=22.8; P<.001), sleep efficiency (F1,24=11.45; P=.002), sleep onset latency (F1,24=5.18; P=.03), soundness of sleep (F1,24=9.34; P=.005), restored feeling upon awakening (F1,24=11.95; P=.002), and general fatigue (F1,26=13.88; P=.001). Although other group x time interactions were not significant, overall adjusted effect sizes for all sleep variables as well as for fatigue, depression, anxiety, and quality of life ranged from small to large.
CBT-I delivered through an interactive, individually-tailored Internet intervention may be a viable treatment option for cancer survivors experiencing insomnia.
cancer; oncology; sleep; insomnia; CBT-I; Internet
Investigations examining psychosocial adjustment among childhood cancer survivors have focused primarily on negative effects and psychopathology. Emergent literature suggests the existence of positive impact or adjustment experienced after cancer, as well. The purpose of this study is to examine the distribution of Perceived Positive Impact (PPI) and its correlates in young adult survivors of childhood cancer.
6,425 survivors and 360 siblings completed a comprehensive health survey, inclusive of a modified version of the Posttraumatic Growth Inventory (PTGI) as a measure of PPI. Linear regression models were used to examine demographic, disease and treatment characteristics associated with PPI.
Survivors were significantly more likely than siblings to report PPI. Endorsement of PPI was significantly greater among female and non-white survivors, and among survivors exposed to at least one intense therapy, a second malignancy or cancer recurrence. Survivors diagnosed at older ages and fewer years since diagnosis were more likely to report PPI. Income, education and marital/relationship status appeared to have varied relationships to PPI depending upon the subscale being evaluated.
The existence and variability of PPI in survivors in this study suggest that individual characteristics, inclusive of race, gender, cancer type, intensity of treatment, age at diagnosis and time since diagnosis, have unique and specific associations with different aspects of perceived positive outcomes of childhood cancer.
Psychosocial; childhood cancer; trauma; event centrality; survivors
We studied patients’ experiences with oncology providers regarding communication about sexual issues during and after treatment for cancer.
During development of the Patient-Reported Outcomes Measurement Information System (PROMIS®) Sexual Function measure, we collected focus group and survey data on communication with oncology professionals about sexual problems. We conducted 16 focus groups with patients and survivors (n = 109) and analyzed the discussions for major themes, including experiences discussing sex during oncology visits. During testing of the PROMIS Sexual Function measure, we assessed experiences discussing sexual problems with oncology professionals (n = 819) and measured bivariate associations between asking for information from clinicians and sexual function and satisfaction with sex life.
Most patients and survivors (74%) thought discussions with oncology professionals about sexual problems were important, but whether they had ever received information about sexual function from a provider varied by cancer type (23% lung, 29% breast, 39% colorectal, and 79% prostate). Those who had asked an oncology professional about sexual problems had significantly greater interest in sexual activity as well as more sexual dysfunction.
Sexual problems are a widespread concern among patients and survivors, but there is much variation in experiences of communication about sexual issues and many patients do not receive the information they need from their oncology providers. There are large differences in sexual function between patients who do and do not ask providers about sexual problems. Sexual health has yet to be fully integrated into oncology care, even for cancers involving sex organs.
Attitude to Health; Communication; Focus Groups; Health Services Needs and Demand; Neoplasms; Physician-Patient Relations; Questionnaires; Sexuality
The very name “psychooncology” implies interaction between brain and body. One of the most intriguing scientific questions for the field is whether or not living better may also mean living longer. Randomized intervention trials examining this question will be reviewed. The majority show a survival advantage for patients randomized to psychologically effective interventions for individuals with a variety of cancers, including breast, melanoma, gastro-intestinal, lymphoma, and lung cancers. Importantly for breast and other cancers, when aggressive anti-tumor treatments are less effective, supportive approaches appear to become more useful. This is highlighted by a recent randomized clinical trial of palliative care for non-small cell lung cancer patients.
There is growing evidence that disruption of circadian rhythms, including rest-activity patterns and hypothalamic-pituitary-adrenal (HPA) axis function, affects cancer risk and progression. Women with metastatic breast cancer have flatter than normal diurnal cortisol patterns, and the degree of loss of daily variation in cortisol predicts earlier mortality. Mechanisms by which abnormal cortisol patterns affect metabolism, gene expression, and immune function are reviewed. The HPA hyperactivity associated with depression can produce elevated levels of cytokines that affect the brain. Tumor cells can, in turn, co-opt certain mediators of inflammation such as NFkB, IL-6, and angiogenic factors to promote metastasis. Also, exposure to elevated levels of norepinephrine triggers release of vascular endothelial growth factor (VEGF) which facilitates tumor growth. Therefore the stress of advancing cancer and management of it is associated with endocrine, immune, and autonomic dysfunction that has consequences for host resistance to cancer progression.
An increasingly important concern for clinicians who care for patients at the end of life is their spiritual well-being and sense of meaning and purpose in life. In response to the need for short-term interventions to address spiritual well-being, we developed Meaning Centered Group Psychotherapy (MCGP) to help patients with advanced cancer sustain or enhance a sense of meaning, peace and purpose in their lives, even as they approach the end of life.
Patients with advanced (stage III or IV) solid tumor cancers (N = 90) were randomly assigned to either MCGP or a supportive group psychotherapy (SGP). Patients were assessed before and after completing the 8-week intervention, and again 2 months after completion. Outcome assessment included measures of spiritual well-being, meaning, hopelessness, desire for death, optimism/pessimism, anxiety, depression and overall quality of life.
MCGP resulted in significantly greater improvements in spiritual well-being and a sense of meaning. Treatment gains were even more substantial (based on effect size estimates) at the second follow-up assessment. Improvements in anxiety and desire for death were also significant (and increased over time). There was no significant improvement on any of these variables for patients participating in SGP.
MCGP appears to be a potentially beneficial intervention for patients’ emotional and spiritual suffering at the end of life. Further research, with larger samples, is clearly needed to better understand the potential benefits of this novel intervention.
psychotherapy; meaning; spiritual well-being; palliative care; existential
To better understand the process and effect of social support exchanges within computer-mediated social support (CMSS) groups for breast cancer patients, this study examines 1) the dynamic interplay between emotional support giving and receiving and 2) the relative effects of emotional support giving and receiving on patients’ psychosocial health outcomes.
Data was collected from 177 patients who participated in online cancer support groups within the Comprehensive Health Enhancement Support System (CHESS) during the 4-month intervention. Data included 1) pretest and/or posttest survey scores of demographic, disease-related, and psychosocial factors, 2) automatically collected CHESS usage data, and 3) computer-aided content analysis of social support messages posts.
Hierarchical regression analyses revealed that those who receive higher levels of support from others have fewer breast cancer-related concerns (β= −.15, p<.05), while those who give higher levels of support to others reframe their own problems in a positive light and adopt more positive strategies for coping (β= .16, p<.05). In addition to these positive effects, partial correlation analysis indicated that these two supportive behaviors are reciprocal.
We concluded that supportive exchanges of receiving and giving play positive, but different, roles in predicting psychosocial health outcomes. Moreover, emotional support giving and receiving tend to reinforce each other. Our findings help practitioners, health care providers, and health system designers make sense of diverse social support processes among cancer patients participating within CMSS groups.
Social Support Giving; Social Support Receiving; Reciprocity; Computer-Mediated Social Support (CMSS) Group; Comprehensive Health Enhancement Support System (CHESS); Interactive Health Communication System (IHCS)
To determine whether unique groups of adult childhood cancer survivors could be defined on the basis of modifiable cognitive, affective and motivation indicators. Secondary objectives were to examine to what extent group membership covaried with more static variables (e.g., demographics, disease, and treatment) and predicted intent for subsequent medical follow-up.
Using latent class analysis of data from 978 participants (ages 18–52 years; mean, 31; SD, 8) in the Childhood Cancer Survivor Study, we classified survivors according to their worries about health, perceived need for follow-up care, health motivation, and background variables. Intent to participate in medical follow-up, as a function of class membership, was tested using equality of proportions.
The best-fitting model (BIC=18,540.67, BLMRT=<0.001) was characterized by three distinctive survivor classes (worried, 19%; self-controlling, 26%; collaborative, 55%) and three significant class covariates (gender, perceptions of health and severity of late effects). A smaller proportion of survivors in the self-controlling group [81%] than in the worried [90%] (P=0.015) and collaborative [88%] (P=0.015) groups intended to obtain a routine medical checkup. A smaller proportion of survivors in the self-controlling group [32%] than in the collaborative [65%] (P=<0.001) and worried [86%] (P=<0.001) groups planned a cancer-related check-up. A smaller proportion of survivors in the collaborative group [65%] than in the worried group [86%] (P=<0.001) were likely to obtain a cancer-related check-up.
Childhood cancer survivors can be classified according to modifiable indicators. The classification is distinctive, predicts intent for future medical follow-up, and can inform tailored interventions.
childhood cancer; survivorship; late effects; medical follow-up; pediatric oncology
This article reviews recent literature on adults’ quality of life following hematopoietic stem cell transplantation (HSCT).
We identified 22 prospective reports with at least 20 participants at baseline through a search of databases (Medline and PsycInfo) and handsearching of articles published from 2002 to October 2007. If longitudinal data were not available or were scarce for a particular topic or time point, cross-sectional studies were reviewed.
Although physical, psychological, and social aspects of quality of life tend to improve during the years following transplantation, a significant proportion of HSCT survivors experience persistent anxiety and depressive symptoms, fatigue, sexual dysfunction, and fertility concerns. Despite ongoing treatment side effects, the majority of HSCT survivors resume their work, school, or household activities.
We conclude that theory-driven research with larger samples is needed to identify subgroups of HSCT survivors with adjustment difficulties. Such research would examine survivors’ evolving standards and definitions of quality of life to improve the accuracy and meaningfulness of assessment and incorporate biological, psychological, and contextual factors that may contribute to positive adjustment.
cancer; oncology; hematopoietic stem cell transplantation; bone marrow; quality of life; psychological adjustment
There is a growing body of evidence suggesting breast cancer (BC) recurrence risk might be linked to behavioral factors. However, little is known about BC survivors' beliefs regarding the link between their behavior and recurrence risk. The objective of this study was to describe BC survivors' beliefs regarding performance of behaviors potentially associated with BC recurrence risk reduction, and to examine the link between these behaviors and BC recurrence risk reduction beliefs, worry, and risk perception.
200 female BC survivors (age, years: mean = 57.7, standard deviation = 9.2) completed a questionnaire assessing beliefs about the effectiveness of 14 potential BC recurrence risk reduction behaviors, their performance of these potential risk reduction behaviors, recurrence worry, and perception of personal lifetime BC recurrence risk.
The behaviors most frequently endorsed as potentially reducing BC recurrence risk included avoiding tobacco use (84%), exercising at least three times per week (74%), eating an average of five servings a day of fruits and vegetables (72%), and limiting food intake to maintain current weight or lose weight (70%). Multivariate logistic regression analyses predicting behavioral performance showed that beliefs were consistently associated with behavior while worry and risk perception were largely unrelated to behavior.
BC survivors' beliefs about the effectiveness of potential BC recurrence risk reduction behaviors are largely consistent with empirical findings and relate strongly to actual behavioral performance. Misconceptions about the effects of behavior to reduce BC recurrence risk are important targets for clinical and public health efforts.
cancer; oncology; recurrence; prevention and control; behavior; survivors
This study examined differences in attitudes and preferences between African American and White caregivers about cancer treatment and care.
There were 173 White and 26 African American caregivers of advanced lung cancer patients who were recruited as a convenience sample. A telephone interview was conducted to collect information using a semi-structured questionnaire. Using logistic regression, we examined differences between racial groups concerning therapeutic and caregiving issues controlling for socioeconomic and demographic variables.
The regression analyses showed that African American caregivers had higher expectations for treatment outcomes (p≤0.05) but poorer understanding of hospice and a stronger preference for hospice care outside the home (p≤0.05). They were more likely to believe that the patient communicates with the family about cancer treatment to meet the family’s expectations rather than seek emotional support (p≤0.01). They were also more reluctant to endorse children’s responsibility to make a treatment decision and are less likely to be fully satisfied with the decision-making process (p≤0.05).
The findings suggest some differences in beliefs and cultural values between African American and White caregivers. African American caregivers appear to believe more in the possibility of curative care for advanced lung cancer and eschew hospice care. The findings inform possible challenges regarding communication about end-of-life treatment and care with African American caregivers and a need for the provision of adequate information and education.
African American; cancer; oncology; decision making; health disparity
To test the effects of patient and patient–oncologist relationship factors on the time spent communicating about health-related quality of life (HRQOL) during outpatient clinic encounters between oncologists and their patients with advanced cancer.
Using mixed methods, we coded for duration of HRQOL talk in a subset of audio-recorded conversations from the Study of Communication in Oncologist–Patient Encounters (SCOPE) Trial. Multivariable linear regression modeling was used to investigate the relationship between duration of HRQOL talk and gender concordance, race concordance, patient education status, patient marital status, and length of the patient–oncologist relationship (i.e. number of previous visits).
Sixty-six encounters were analyzed that involved 63 patients and 34 oncologists. Patients were more likely to be female (51%), white (86%), married (78%), and possess a college or more advanced degree (33%). Most oncologists were male (82%) and white (82%). Mean ages were 58.8 years for patients and 44.9 years for oncologists. Regression results showed that the number of a patient’s previous visits with their oncologist was significantly associated with a longer duration of HRQOL talk during their audio-recorded clinic visit. The remaining independent variables, gender concordance, race concordance, patient education status, and patient marital status were not significant predictors of duration of HRQOL talk.
Our findings suggest that length of the patient–oncologist relationship is related to duration of HRQOL talk. Improvements in HRQOL communication may best be achieved through efforts directed at those in earlier stages of the doctor–patient relationship.
cancer; oncology; patient–provider relationship; communication; quality of life
Interventions that target cancer patients and their caregivers have been shown to improve communication, support, and emotional well-being.
To adapt an in-person communication intervention for cancer patients and caregivers to a web-based format, and to examine the usability and acceptability of the web-based program among representative users.
A tailored, interactive web-based communication program for cancer patients and their family caregivers was developed based on an existing in-person, nurse-delivered intervention. The development process involved: 1) building a multidisciplinary team of content and web design experts, 2) combining key components of the in-person intervention with the unique tailoring and interactive features of a web-based platform, and 3) conducting focus groups and usability testing to obtain feedback from representative program users at multiple time points.
Four focus groups with 2 to 3 patient-caregiver pairs per group (n = 22 total participants) and two iterations of usability testing with 4 patient-caregiver pairs per session (n = 16 total participants) were conducted. Response to the program's structure, design, and content was favorable, even among users who were older or had limited computer and internet experience. The program received high ratings for ease of use and overall usability (mean System Usability Score of 89.5 out of 100).
Many elements of a nurse-delivered patient-caregiver intervention can be successfully adapted to a web-based format. A multidisciplinary design team and an iterative evaluation process with representative users were instrumental in the development of a usable and well-received web-based program.
Communication; caregiving; social support; technology assessment; cancer; oncology
To understand the influence of cancer-related infertility on women’s long-term distress and quality of life. Women diagnosed at age 40 or less with breast cancer, Hodgkin disease (HD), non-Hodgkin lymphoma (NHL), were interviewed an average of 10 years later. We predicted that women whose desire for a child at diagnosis remained unfulfilled would be significantly more distressed.
Participants completed a semi-structured phone interview, including the SF-12®, Brief Symptom Inventory-18, Impact of Events Scale (IES), Reproductive Concerns Scale (RCS), brief measures of marital satisfaction or comfort with dating, sexual satisfaction, and menopause symptoms.
Of 455 women contacted by phone, 240 (53%) participated. Seventy-seven women had wanted a child at diagnosis but did not conceive subsequently (38 remaining childless and 39 with secondary infertility). Even controlling for other psychosocial and health factors, this group had higher distress about infertility (RCS) (P < 0.001), had more intrusive thoughts about infertility, and used more avoidance strategies when reminded of infertility (IES) (P < 0.001). Childless women were the most distressed. Women with adopted or stepchildren were intermediate, and those with at least one biological child were least distressed. Infertility-related distress did not differ significantly by cancer site.
Even at long-term follow-up, distress about interrupted childbearing persists, particularly in childless women. Social parenthood buffers distress somewhat, but not completely. Not only is it important to offer fertility preservation before cancer treatment, but interventions should be developed for survivors to alleviate unresolved grief about cancer-related infertility.
Cancer; infertility; survivorship; childbearing; distress; parenting