Although research has indicated a diagnosis of cancer is most often distressing for patients and their families, few studies have examined which patients access resources to manage distress or how distress levels affect resource utilization. This study explored psychosocial and supportive care resource utilization in a large cancer population at a Canadian tertiary cancer centre over a 12-month period in a usual care setting.
Patients who were new to the Tom Baker Cancer Centre completed the Distress Thermometer, the Pain and Fatigue Thermometers, the Psychological Screen for Cancer (Part C) that measures anxiety and depression, self-report questions on resources accessed and a demographic form at baseline, 3, 6 and 12 months. No feedback or specific triage to services was provided in order to observe usual care practices.
A total of 714 patients provided baseline data with 505 retained at 12 months. Twenty-four percent indicated they accessed at least one service (e.g. individual counselling, nutritionist or resource social worker) over the 12 months. Patients who were older, less educated and with lower income were less likely to access services. People who reported higher symptom burden were more likely to access services at each time point.
Overall levels of access of psychosocial services were relatively low in this population and varied by socio-demographic variables and symptom burden. Routine monitoring of psychosocial, practical and physical concerns is a potential strategy for targeting individuals who may require additional information or support in accessing available services to manage their concerns. Copyright
Prophylactic mastectomy (PM) offers 90% or greater reduction in risk of breast cancer to women at increased hereditary risk. Nonetheless, acceptance in North America is low (0-27%) and 25-50% of women electing surgery report psychological distress and/or difficulty adapting following PM. Most women also report reduced cancer worry postoperatively. Psychological consultation to aid decision-making and post-surgical coping is not routinely offered. This retrospective, cross-sectional study explored interest in and acceptability of psychological consultation for issues related to PM among 108 women who had undergone or were considering surgery.
Qualitative interviews were conducted with 26 healthy women who had undergone prophylactic mastectomy of both (bilateral) breasts (BPM), 45 women who had undergone prophylactic mastectomy of one breast (unilateral contralateral) (UPM) after diagnosis of invasive breast cancer in the other breast or ductal carcinoma in situ (DCIS), and 37 women who were considering having PM surgery.
Of the women who had undergone PM, more than half felt pre-surgical psychological consultation was advisable; nearly 2/3 thought post-surgical psychological consultation would be helpful. All women currently considering PM believed psychological consultation would aid decision-making and preparation for surgery. Strong support was reported in all groups for the emotional and informational value of speaking with a woman who had previously undergone PM.
Narratives illustrate the nature and intensity of the need for psychological support and describe preferences for the role of the psychologist. Suggestions are offered for integration of psychological services for women deciding about or adapting to PM.
The diagnosis and treatment of cancer cause considerable psychological distress and morbidity. Consequently, cancer patients have high needs for informational and emotional support and doctors vary in their ability to recognise and address these needs. This study investigated patients' attempts to gain informational and emotional support through the use of verbal cues. The sample consisted of 298 patients with heterogeneous cancers, seeing one of five medical and four radiation oncologists for the first time. Sociodemographic variables and patient anxiety and satisfaction ratings were obtained. Transcripts of the audiotaped consultations were analysed and question-asking, use of indirect cues, cue type (informational or emotional), content categories in which questions and cues occurred and doctor response (responded to or not responded to), were recorded. Patients asked a median of 11 questions and gave two cues per consultation, usually during treatment discussions. Patients gave, and doctors responded to, more informational than emotional cues. Patients gave significantly more informational cues during longer consultations. Younger and female patients gave more cues for emotional support and asked questions. No demographic variables were associated with the doctors' response to emotional and informational cues; however, consultations in which more informational cues were responded to were shorter, even when controlling for the number of cues given. Satisfaction with the consultation and patient anxiety were unaffected by doctors' responses to cues. Overall, results showed that doctors effectively identify and respond to the majority of informational cues; however, they are less observant of and able to address cues for emotional support. Cues can be addressed without lengthening the consultation or increasing patient anxiety.
An overview is provided of research into the return to work of cancer survivors, examining both the rate of return to work and factors impacting this return. A series of literature searches was conducted on MEDLINE and PSYCLIT databases for the years 1985-1999. Studies had to focus on the patient's perspective and had to include either the percentage of return to work or factors associated with return to work. Case studies and studies of cancer as an occupational disease were excluded. The search identified 14 studies. The mean rate of return to work was 62% (range 30-93%). The following factors were negatively associated with return to work: a non-supportive work environment, manual labour, and having head and neck cancer. Sociodemographic characteristics were not associated with return to work. For increasing age, associations were mixed. The increased survival rate of cancer patients warrants attention to the problems survivors may encounter upon their return to work. More systematic research is needed to establish more clearly the relative importance of factors associated with return to work of cancer survivors, which, in turn, would contribute to an increase in the labour-participation of cancer survivors.
Ovarian cancer is a life-threatening diagnosis which poses multiple challenges. The purpose of this study is to describe the quality of life (QOL) concerns and survivorship sequelae of long-term (>5 yr) early-stage ovarian cancer survivors accrued through the clinical cooperative Gynecologic Oncology Group. Forty-nine ovarian cancer survivors with a mean age at diagnosis of 55.9 yr (range 30-76) completed a telephone interview assessing QOL, psychosocial status, sexual functioning and late-effects of treatment. Results indicate that this disease-free early-stage sample enjoys a good QOL, with physical, emotional, and social well-being comparable to other survivors and same-aged noncancer cohorts. However, 20% of survivors indicated the presence of long-term treatment side effects, with a subset reporting problems related to abdominal and gynecologic symptoms, and neurotoxicity. Spiritual well-being was significantly positively associated with personal growth and mental health, and negatively associated with a declining health status. Lingering psychological survivorship sequelae included fear of follow-up diagnostic tests and fear of recurrence. Forty-three percent of respondents expressed that they would likely participate in a counseling program today to discuss psychosocial issues raised by having had ovarian cancer, and 56% stated that they would have attended a support program during the initial treatment if it had been offered. This information provides some insight into the complex survivorship relationships between quality of life, long-term physical and sexual sequelae, and factors of resilience and growth which appear to promote a sense of well-being as a result of the cancer experience.
Exercise participation has been shown to improve cardiovascular fitness and reduce psychological distress among women receiving chemotherapy and/or radiation. The purpose of this pilot study was to examine the changes in distress and body image, and fitness following exercise participation among 24 women who had been diagnosed with breast cancer within the previous 3 years. The women were randomly assigned to participate in a 12-week supervised aerobic exercise program in a hospital setting or a wait-list control group. Assessments of distress and body image were conducted at pre- and post-treatment. Data showed that the women in the exercise group improved significantly in body image (Physical Condition and Weight Concerns subscales) vs control group participants at post-treatment. Reductions in distress were also noted in the exercise group, but these were nonsignificant. At post-treatment, there were modest improvements in fitness in the exercise group.
The 2008 Institute of Medicine's Report, Cancer Care for the Whole Patient (IOM, 2008), recommends screening cancer patients for distress. Cancer programs throughout the United States are struggling to achieve this standard. The IOM report indicates that only 14% of 1000 randomly selected American Society of Clinical Oncology (ASCO) members and eight of 15 National Comprehensive Cancer Network (NCCN) centers reported screening for distress in at least some of their patients [J Natl Compr Cancer Netw 2007;5:99-103]. Without adequate screening, distress often goes unnoticed by cancer professionals and there is little information about the prevalence of distress. The main objective of this article is to present data from 1281 distress screenings completed by patients treated within a community cancer center. Specifically, this article reports the intensity of distress, frequency of problem endorsement, and requests for specific psychosocial providers by cancer patients.
Medical and radiation oncology patients completed a distress screener before their first physician appointment. The screening instrument included the Distress Thermometer, a symptom checklist, and a list of psychosocial providers that the patient could request to meet.
Thirty-two percent of this sample rated distress above the threshold level. Worry was the most common problem endorsed followed by financial issues. Emotional concerns were endorsed by 59% of the sample. The cancer dietitian was the psychosocial professional most frequently requested by patients.
Distress screening can be accomplished within a community cancer center but the provision of psychosocial services is difficult given the high volume of need.
Many studies have reported that cancer patients who show difficulties maintaining perceptions of control report more psychological distress than patients who are higher in control. Besides perceptions of control, feelings of illness uncertainty have also been regarded as a predictor of psychological distress. Given these strong relationships between perceptions of low control and high illness uncertainty and psychological distress, the present study examined whether an informational self-management intervention (booklet) could moderate this relationship. The booklet contained general and specific information about cancer and cancer treatment, information about possible coping strategies, and social comparison information, which consisted of short stories of other patients. Prior to radiotherapy, 209 patients with cancer completed baseline measures, including control and illness uncertainty. After completing radiotherapy, patients were randomly allocated to receive either a booklet (experimental group; N=103) or no booklet (control group; N=106). Three months after the intervention, aspects of psychological distress were assessed, including tension, anger, depression, fatigue and vigour. The results supported our hypotheses and suggested that a self-management intervention is relevant in reducing the relationship between control and illness uncertainty before radiotherapy and psychological distress after radiotherapy. This seems important, especially for high-risk patients who perceive little control and much illness uncertainty.
This pilot study examines whether hormone therapy for breast cancer affects cognition. Patients participating in a randomised trial of anastrozole, tamoxifen alone or combined (ATAC) (n=94) and a group of women without breast cancer (n=35) completed a battery of neuropsychological measures. Compared with the control group, the patients were impaired on a processing speed task (p=0.032) and on a measure of immediate verbal memory (p=0.026) after controlling for the use of hormone replacement therapy in both groups. Patient group performance was not significantly related to length of treatment or measures of psychological morbidity. The results showed specific impairments in processing speed and verbal memory in women receiving hormonal therapy for the treatment of breast cancer. Verbal memory may be especially sensitive to changes in oestrogen levels, a finding commonly reported in studies of hormone replacement therapy in healthy women. In view of the increased use of hormone therapies in an adjuvant and preventative setting their impact on cognitive functioning should be investigated more thoroughly.
Physician-patient communication is a critical factor for comprehensive care in oncology. Although a number of studies have been carried out in Northern Europe and the US on this subject, no data are available in Southern European countries. As a part of a multicenter Southern European Psycho-Oncology study (SEPOS), the present investigation was conducted to examine communication skills and related variables (i.e. psychosocial orientation, and burnout) among 125 physicians from Italy, Portugal, and Spain. The Self-Confidence in Communication Skills (SCCS) scale was given to assess physicians' perception of their communication skills and the Expected Outcome of Communication (EOC) scale was administered to examine the physicians' expectations about the effects of communicating with their patients. Doctors' psychosocial orientation was measured by using the Physician Belief Scale (PBS) and burnout was measured by using the Maslach Burnout Inventory (MBI). Although the physicians reported receiving minimal training in communication during their education, they tended to perceive themselves as skilled in patient communication, apart from some areas (e.g. dealing with denial, managing uncertainty, assessing anxiety and depression, and promoting patient-family openness). Low psychosocial orientation and burnout symptoms (i.e. emotional exhaustion, depersonalization, and poor personal accomplishment in their job) were associated with lower confidence in communication skills and higher expectations of a negative outcome, following physician-patient communication. The results suggest that there is a need for training cancer physicians in communication and for increasing a more definite psychosocially oriented approach in cancer care in Mediterranean countries.
This research investigated psychological characteristics associated with delay in seeking help for symptoms of rectal cancer. Sixty nine subjects reconstructed pivotal events beginning with symptom onset and ending with medical consultation, and completed the Temperament and Character Inventory (TCI) and the State-Trait Anxiety Inventory (STAI). The mean delay time was around 6 months, with about 1 out of 6 subjects waiting one year or more. Subjects estimated the lengths of two sequential segments of total time to consultation: (1) Symptom Appraisal time (from symptom onset to recognition of possible seriousness), and (2) Action Appraisal time (from recognition of seriousness to medical consultation). Symptom Appraisal time accounted for over two-thirds of total time and was associated with low scores on the TCI Harm Avoidance scale (TCI-HA), indicating dispositional insensitivity to threat, and marginally associated with less education and younger age. Action Appraisal time was not associated with any demographic or psychological variables. Low TCI-HA scores were also associated with lower likelihood of previous cancer screening, and with better judgments of premorbid health. Low STAI Trait scores were associated with better judgments of premorbid health and fewer doctor visits. Results are discussed regarding the importance of understanding dispositional characteristics related to health behavior.
This systematic review aims to assess the psychological impact of mammographic screening on women with a family history of breast cancer. Women with a family history, and hence increased risk, of breast cancer are known to experience higher levels of anxiety about cancer. They are also often offered screening from an earlier age. The psychological consequences of screening are therefore of particular importance for this group of women. A comprehensive search of 4 electronic databases was conducted from 1982 to 2003, combining sets of terms relating to (1) breast screening or mammography (breast screen*; mammogra*), (2) psychological impact (adverse effects; anxi*; distress; nervous; psych*, psychological consequences; stress; worry) and (3) family history. Reference lists from relevant papers were examined for additional papers. The review identified seven papers from four countries. Overall, the findings indicate that, similar to women in the general population, most women with a family history do not appear to experience high levels of anxiety associated with mammographic screening. Although women who are recalled for further tests do experience increased anxiety the levels appear to be no greater than for women without a family history. We conclude that further research on this topic is required--this should include studies designed specifically to consider both the negative and positive impact of mammographic screening on women with a family history, using validated measures of anxiety and worry in combination with qualitative research.
The purpose of this study is to determine how to disclose bad news to patients with cancer in China.
One hundred fifty pairs of hospitalized patients and their family members were investigated using a self-designed questionnaire.
More patients than their families believed that patients should be informed of their illnesses (98.0% vs. 66.7%, p < 0.001), that patients should be informed of their condition completely (69.3% vs. 18.7%, p < 0.001), that patients should be informed as soon as the diagnoses were confirmed (49.3% vs. 14.7%, p < 0.001), and that patients should be informed by doctors (55.3% vs. 10.7%, p < 0.001). κ coefficients between patients and their families on "whether, when and who to disclose" ranged from -0.084 to 0.004. Univariate logistic analyses demonstrated that farmer patients and patients with lower education and lower income were less likely to prefer to be informed completely; farmer patients and patients without an intended curative operation history were less likely to prefer to be informed immediately and directly by doctors. Multivariate analyses showed that farmer patients were less likely to prefer to be informed completely, immediately, and directly by doctors.
There was poor or slight concordance in disclosure preferences between patients with cancer and their families. More patients than their families wanted to be informed completely, immediately, and directly by doctors. Farmer patients with cancer were less likely to prefer to be informed completely, immediately, and directly by doctors.
The mini-Mental Adjustment to Cancer Scale is designed to assess psychological responses to cancer diagnosis and is widely used in research and clinical practice. Recent evidence demonstrates adequate convergent validity but inconsistent internal consistency and factor structure. This study aimed to provide a parsimonious factor structure with clinical utility.
Repeated measures data were collected from 160 cancer patients (mixed illness type) at diagnosis and 3-month follow-up. Principal axis factoring with oblimin rotation was used. The number of factors was decided using parallel analysis. The resultant factors were compared against the recommended five-factor structure on internal consistency (Cronbach's alpha) and test-retest reliability and convergent validity (Pearson's correlation).
Parallel analysis suggested that a four-factor model optimally fits these data. Two of these-cognitive avoidance and fighting spirit-are equivalent to the original factor structure. Redistribution of the remaining items resulted in factors of cognitive distress and emotional distress. Internal consistency and test-retest reliability of the new four-factor structure are equivalent, but convergent validity is much improved overall when compared with a five-factor structure, with the exception of the fighting spirit factor.
The revised four-factor structure represents a more psychometrically sound measure of psychological adjustment in the current dataset. Findings related to the larger cognitive distress factor are congruent with data from foreign-language validation studies. The brevity of this improved measure may make it easier to administer in the clinical setting.
The experience of cancer can be understood as a psychosocial transition, producing both positive and negative outcomes. Cognitive processing may facilitate psychological adjustment.
Fifty-five post-treatment, colorectal cancer survivors (M=65.9 years old; SD=12.7), an average of 13 months post-diagnosis, were recruited from a state cancer registry and completed baseline and 3-month questionnaires assessing dispositional (social desirability), cognitive processing (cognitive intrusions, cognitive rehearsal), and psychological adjustment variables (posttraumatic growth (PTG), posttraumatic stress disorder (PTSD) symptomatology, depression, anxiety, positive affectivity).
PTSD symptomatology was positively associated with depression, anxiety, and negatively associated with positive affectivity. In contrast, PTG scores were unrelated to PTSD symptomatology, depression, anxiety, and positive affectivity. In addition, PTG was independent of social desirability. Notably, after controlling for age at diagnosis and education, multiple regression analyses indicated that cognitive processing (intrusions, rehearsal) was differentially predictive of psychological adjustment. Baseline cognitive intrusions predicted 3-month PTSD symptomatology and there was a trend for baseline cognitive rehearsal predicting 3-month PTG.
Additional research is needed to clarify the association between PTG and other indices of psychological adjustment, further delineate the nature of cognitive processing, and understand the trajectory of PTG over time for survivors with colorectal cancer.
The economic impact on individuals with breast cancer is not well understood. We sought to identify and describe the direct and indirect economic losses to breast cancer survivors in Australia. A longitudinal, population-based study of 287 women was used to explore economic outcomes (costs and lost income) for women with breast cancer 0-18 months post-diagnosis. Survey methods collected data on out-of-pocket costs, care-giving support, paid and unpaid work reductions, and perceptions from participants on these financial impacts. Bootstrapping was used to estimate 95% confidence intervals around means. Data were sub-grouped by cost type, age category and disease severity. Lost income, health service expenditures and lost unpaid work were the greatest sources of economic burden. Women with positive lymph nodes reported significantly higher costs than those with negative lymph nodes (US$6674 versus US$3533, p<0.001), and younger women (< or =50 years) with positive lymph nodes experienced costs 80% greater than older women (US$8880 versus US$4937, p<0.001). Economic costs related to breast cancer may continue to affect women 18 months post-diagnosis. Economic research adds an important dimension for understanding the impact of breast cancer, and findings may be used to help improve supportive care services for women and families confronted by this disease.
To determine the effect of exercise on quality of life in (a) a randomized controlled trial of exercise among recently diagnosed breast cancer survivors undergoing adjuvant therapy and (b) a similar trial among post-treatment survivors.
Fifty newly diagnosed breast cancer survivors were recruited through a hospital-based tumor registry and randomized to a 6-month, home-based exercise program (n=25) or a usual care group (n=25). In a separate trial, 75 post-treatment survivors were randomized to a 6-month, supervised exercise intervention (n=37) or to usual care (n=38). Participants in both studies completed measures of happiness, depressive symptoms, anxiety, stress, self-esteem, and quality of life at baseline and 6 months.
Forty-five participants completed the trial for newly diagnosed survivors and 67 completed the trial for post-treatment survivors. Good adherence was observed in both studies. Baseline quality of life was similar for both studies on most measures. Exercise was not associated with quality of life benefits in the full sample of either study; however exercise was associated with improved social functioning among post-treatment survivors who reported low social functioning at baseline (p<0.05).
Exercise did not affect quality of life in either recently diagnosed or post-treatment breast cancer survivors; however this may be due in part to relatively high baseline functioning among participants in both studies. Strategies for future research include limiting enrollment to survivors who report reduced quality of life on screening questionnaires and targeting survivor subgroups known to be at particular risk for quality of life impairment.
To investigate the readiness of patients to address emotional needs up to 18 months following a diagnosis of breast, lung or prostate cancer.
Patients (N = 42) attending pre-treatment, treatment and follow-up clinics were provided with information designed to help them manage their emotional reactions to cancer. Patients were interviewed 3–4 weeks later about their emotional experience of cancer and their attitudes towards managing emotional problems. Qualitative data analysis followed a constant comparative approach.
Patients early in the cancer trajectory, who had not yet been engaged in chemotherapy or radiotherapy, described emotional distress as a temporary and understandable reaction that did not warrant professional intervention. They valued knowing that support was available, but did not want to use it, and were reluctant to acknowledge or address emotional needs. Conversely, patients currently or recently engaged in treatment readily acknowledged their emotional needs and welcomed help to address these.
Drawing on social cognitive and other theories, we suggest that engagement in physical treatment and care allows patients to address emotional needs following a cancer diagnosis. Guidance that emotional needs should routinely be assessed and addressed at key points in the cancer trajectory should therefore be implemented cautiously when patients are only recently diagnosed; psychological intervention may be less appropriate at this time than later. Copyright
The aim of the study was to assess symptoms of depression and anxiety in patients with head and neck cancer up to 18 months after radiotherapy.
Prospective observational study of consecutive head and neck outpatients was conducted at a tertiary cancer centre (n = 101). Eligibility included diagnosis of cancer in the head and neck region, where the patient agreed to radiotherapy with curative intent. Data were collected before commencement of radiotherapy and 3 weeks and 18 months after completion. Symptoms of depression and anxiety were assessed by the Hospital Anxiety and Depression Scale. Tumour/treatment-related physical symptoms were assessed using the ‘Additional Concerns’ subscale of the Functional Assessment of Chronic Illness Therapy for Head and Neck Cancer.
The prevalence of identified probable cases of depression was 15% at baseline, increasing to 29% 3 weeks post-treatment, falling to 8% at 18-month follow-up. The number of probable cases of anxiety was 20% at baseline, 17% at 3 weeks post-treatment and 22% at 18-month follow-up. Depression scores significantly increased from baseline to 3 weeks post-treatment and decreased at 18-month follow-up. Variability in depression scores was accounted for by tumour/treatment-related physical symptoms. Anxiety scores significantly decreased between baseline and 3-week post-treatment and increased at 18-month follow-up. Younger age and more tumour/treatment-related physical symptoms predicted anxiety scores.
The rates of depression in head and neck cancer patients increase following cancer treatment and are related to tumour/treatment-related physical symptoms. Anxiety levels are higher pre-treatment, lower immediately following cancer treatment but rise to near pre-treatment levels more than a year after completion of cancer treatment. Copyright