Prospective predictors of psychosocial support service use after cancer

Objective: To identify prospective predictors of psychosocial support service utilisation by people with cancer. Consistent with the theory of planned behaviour (TPB), attitudes towards help seeking and behavioural intentions were predicted to lead to greater support service utilisation. Methods: A heterogeneous sample of cancer patients from a regional cancer treatment centre in Australia completed a prospective survey (n=439 at recruitment, 61.2% response rate; n=396 at follow‐up) examining the utilisation of psychosocial support services. Demographic variables (age and gender), social support, social constraints, cancer specific distress, and positive and negative attitudes towards help seeking were examined as prospective predictors of support service use. Further, a series of regression analyses explored mediation of the relationship between attitudes to seeking help and support service use by behavioural intentions. Results: Approximately 14% of cancer patients reported using a psychosocial support service in the 6 months following the time of the first study. Females and patients with more positive attitudes towards help seeking were more likely to have utilised a support service in the 6 months following recruitment. The relationship between positive attitudes to seeking help and psychosocial support service use was mediated by behavioural intentions. Conclusions: The TPB appears to have utility in explaining in part use of psychosocial help services. Future studies should include contextual factors in the model. Copyright © 2010 John Wiley & Sons, Ltd.     

Psychological distress and use of psychosocial support in familial adenomatous polyposis

Objective: Familial adenomatous polyposis (FAP) is characterized by multiple adenomas in the colorectum with a high risk to develop colorectal cancer. It is unclear whether individuals at risk of FAP experience distress due to this potentially life‐threatening disease. This nationwide study assessed: (1) the prevalence of psychological distress; and (2) the need for and use of specialized professional psychosocial support. Methods: In this cross‐sectional study, all individuals from families at high risk for FAP registered at the Netherlands Foundation for the Detection of Hereditary Tumours were invited to complete a questionnaire assessing, among other issues, generalized, cancer‐specific and FAP‐specific distress. Results: In total, 525 individuals completed the questionnaire. Approximately 20% of the respondents had moderate to severe levels of FAP‐specific distress. Levels of generalized distress were comparable to the general Dutch population. Significantly more individuals with a FAP diagnosis had frequent cancer worries than those at risk of FAP or non‐carriers (p=0.02). Distress levels were more strongly associated with psychosocial variables (e.g. perceived cancer risk), than with sociodemographic or clinical variables. Up to 43% of the variance in distress could be explained by all variables combined. Of those moderately to severely distressed, 26% had received specialized professional psychosocial support, while 30% of those did not receive the support they wanted. Conclusions: A substantial minority of individuals reported moderate to severe distress levels associated with FAP. However, only one‐third of those received specialized professional psychosocial support. We recommend the use of a screening questionnaire to identify individuals in need of such support. Copyright © 2009 John Wiley & Sons, Ltd.     

Distress screening, rater agreement, and services in pediatric oncology

Objective: Empirically based data support the validity of the distress thermometer recommended by the National Comprehensive Cancer Network as a standard screen for patient distress. However, the feasibility and utility of the distress thermometer has not been studied in the pediatric oncology setting. We conducted a study to: (1) investigate the validity of an adapted distress thermometer with pediatric oncology patients, (2) assess the degree of agreement among different respondents, including physician and psychosocial staff, with respect to (a) the pediatric cancer patient's distress and (b) the caregiver/parent's distress, and (3) to evaluate the relationship between distress levels and the psychosocial services provided to patients and families. Methods: Ninety‐one patients and their English and Spanish‐speaking caregivers were prospectively assessed at 3‐month intervals for 1 year. The quantity of psychosocial services provided to each family was logged for a 12‐month period. Results: Convergent validity was demonstrated by reasonable agreement between the pediatric distress rating tool and standardized measures. Additionally, the demographic and medical predictors of distress were consistent with previously reported findings using more extensive assessment. There was reasonable agreement among multiple raters of the child's distress; however, there was discrepancy between self‐ratings of caregiver distress and psychosocial staff ratings of caregiver distress. This difference in perception impacted the quantity of psychosocial services provided following the baseline assessment. Conclusion: The single‐item distress thermometer is a viable option as a rapid screening tool of patient and caregiver distress to help efficiently identify those who should be evaluated further. Copyright © 2010 John Wiley & Sons, Ltd.     

The contribution of self‐esteem and self‐concept in psychological distress in women at risk of hereditary breast cancer

Objective: Clarification of the role of several aspects of self‐concept regarding psychological distress in women at risk of hereditary breast cancer will help to target counselling and psychosocial interventions more appropriately. In this study, we aimed (1) to examine the role of general self‐esteem and specific aspects of self‐concept (i.e. stigma, vulnerability, and mastery) in psychological distress in women at risk of hereditary breast cancer and (2) to compare the relative importance of these self‐concept aspects in psychological distress in women with low versus high self‐esteem. Methods: General and breast‐cancer‐specific distress, self‐esteem, self‐concept, and demographics were assessed in 246 women being at risk of hereditary breast cancer, who opted either for regular breast surveillance or prophylactic surgery. Results: In the total study group, self‐esteem was negatively associated with general distress. Furthermore, feeling stigmatized was strongly associated with more breast‐cancer‐specific distress, and to a lesser degree with general distress. In women with low‐self esteem, feelings of stigmatization were strongly associated with higher levels of both breast–cancer‐specific and general distress, while a sense of mastery was associated with less general distress. For women with high self‐esteem, feelings of both stigmatization and vulnerability were associated with more breast‐cancer‐specific distress, whereas there were no significant associations with general distress. Discussion: Psychosocial interventions or support groups for women at risk of hereditary breast cancer should focus on self‐esteem and feelings of stigmatization and isolation, and consequently tailor the interventions on specific items for respective women. Copyright © 2010 John Wiley & Sons, Ltd.     

Men's help‐seeking in the first year after diagnosis of localised prostate cancer

This study describes sources of support utilised by men with localised prostate cancer in the first year after diagnosis and examines characteristics associated with help‐seeking for men with unmet needs. A cross‐sectional survey of 331 patients from a population‐based sample who were in the first year after diagnosis (M = 9.6, SD = 1.9) was conducted to assess sources of support, unmet supportive care needs, domain‐specific quality of life and psychological distress. Overall, 82% of men reported unmet supportive care needs. The top five needs were sexuality (58%); prostate cancer‐specific (57%); psychological (47%); physical and daily living (41%); and health system and information (31%). Professional support was most often sought from doctors (51%). Across most domains, men who were older (Ps ≤ 0.03), less well educated (Ps ≤ 0.04) and more depressed (Ps ≤ 0.05) were less likely to seek help for unmet needs. Greater sexual help‐seeking was related to better sexual function (P = 0.03), higher education (P ≤ 0.03) and less depression (P = 0.05). Unmet supportive care needs are highly prevalent after localised prostate cancer diagnosis with older age, lower education and higher depression apparent barriers to help‐seeking. Interventions that link across medicine, nursing and community based peer support may be an accessible approach to meeting these needs. Clinical Trial Registry: Trial Registration: ACTRN12611000392965.     

Referral patterns and psychosocial distress in cancer patients accessing a psycho-oncology counseling service

Objective: One in three cancer patients will experience significant psychosocial distress, yet less than 10% will seek formal counseling. Who are the patients accessing counseling and what are their presenting needs? The purpose of this study was to identify referral patterns and psychosocial distress in cancer patients newly referred to a psycho‐oncology counseling service. Methods: Consecutive new referrals were tracked over 1 year (n=361). On initial visit, 145 patients completed a demographic survey, Brief Symptom Inventory‐18 (BSI‐18), Cancer Coping Questionnaire and Medical Outcomes Study Social Support Survey. Results: Approximately one in five newly referred patients never attended counseling, with a significant representation of men (p=0.016) and lung cancer patients (p=0.010). Of 361 referrals, 295 patients attended initial counseling, 259 were approached, and 145/259 (56%) completed the survey. Most were women (79%), urban‐dwelling (73%), diagnosed with non‐advanced cancer (72%), well‐educated (68%) and married (56%); average age of 52 years (SD=12.3). Two most common diagnoses were breast (36%) and genitourinary (14%) cancers. A total of 59% were significantly distressed (BSI‐18 global severity index T‐score?63) with less available social support than non‐distressed patients (p=0.022). Coping strategy use did not differ significantly between distressed and non‐distressed groups. Two of five patients were not significantly distressed. Conclusions: Most cancer patients attending counseling are well‐educated urban residing women, with significant psychosocial distress. Further research is needed to better understand barriers and appropriate screening methods for accessing counseling, as well as the needs of men, advanced cancer patients, rural residents, and less well‐educated people. Copyright © 2010 John Wiley & Sons, Ltd.     

A community-based approach to cancer counselling for patients and carers: a preliminary study

Objective: The delivery of psychological care services to people with cancer and their carers is a key clinical priority that has yet to be broadly implemented. The present study aimed to provide guidance for service provision by describing a community‐based intervention approach; outlining the characteristics, psychological concerns, and distress outcomes for people who utilise the service. Methods: Over a 3‐year period 681 patients and 520 significant others referred from a community‐based Cancer Helpline received tele‐based psychosocial interventions. Results: In this case series presenting problems varied between patients and significant others, with significant others reporting higher levels of distress (p<0.001). Both patients and significant others experienced decreases in distress over the period of the intervention (p<0.001). Conclusions: This study provides level IV evidence that the tele‐based intervention for cancer‐related distress is an effective approach to service delivery. A randomised control trial is currently underway to assess the effectiveness of this approach. Copyright © 2010 John Wiley & Sons, Ltd.     

Psychosocial service use and unmet need among recently diagnosed adolescent and young adult cancer patients

BACKGROUND:

Adolescents and young adults (AYAs) with cancer demonstrate biomedical risks and psychosocial issues distinct from those of children or older adults. In this study, the authors examined and compared the extent to which AYAs treated in pediatric or adult oncology settings reported use of, and unmet need for, psychosocial support services.

METHODS:

Within 4 months of initial cancer diagnosis, 215 AYAs ages 14 to 39 years (99 from pediatric care settings and 116 from adult care settings; 75% response rate) were assessed for reporting use of information resources, emotional support services, and practical support services. Statistical analyses derived odds ratios and 95% confidence intervals for service use and unmet needs after controlling for race, employment/school status, sex, relationship status, severity of cancer, treatment, and treatment‐related side effects.

RESULTS:

AYAs ages 20 to 29 years were significantly less likely than teens and older patients ages 30 to 39 years to report using professional mental health services and were significantly more likely to report an unmet need with regard to cancer information, infertility information, and diet/nutrition information. Compared with teens who were treated in pediatric facilities, AYAs who were treated in adult facilities were more likely to report an unmet need for age‐appropriate Internet sites, professional mental health services, camp/retreats programs, transportation assistance, and complementary and alternative health services.

CONCLUSIONS:

Substantial proportions of AYAs are not getting their psychosocial care needs met. Bolstering psychosocial support staff and patient referral to community‐based social service agencies and reputable Internet resources may enhance care and improve quality of life for AYAs. Cancer 2013. © 2012 American Cancer Society.     

The nature and timing of distress among post‐treatment haematological cancer survivors

Many people with haematological cancers will not meet the diagnostic criteria for a psychological disorder, but will still suffer distress during treatment and beyond. The current study aimed to explore the nature and timing of psychosocial distress experienced by haematological cancer survivors. Twenty‐three post‐treatment haematological cancer survivors participated in a semi‐structured interview. Data were analysed using thematic analysis which involved identifying, analysing and reporting themes. Four themes were identified: Apprehension about leaving the safety of the health care system comprises the struggles encountered when transitioning from patient to survivor, Uncertainty and life transitions in the post‐treatment period encompasses the changes survivors face when attempting to re‐enter their “normal” lives, Distress associated with ongoing physical problems or impairment describes issues associated with the ongoing physical sequelae, and Fear of recurrence encapsulates how the continuing threat of cancer recurrence impacted survivors. This study has found that distress is ongoing for many haematological cancer survivors in the post‐treatment period . It is imperative that distress is identified and support offered to those in need to prevent further psychosocial issues. It is especially important to consider the psychosocial needs of survivors in the post‐treatment stage who are discharged from the health system may be unsure where to seek help.     

Intimacy processes and psychological distress among couples coping with head and neck or lung cancers

Objective: Couples coping with head and neck and lung cancers are at increased risk for psychological and relationship distress given patients' poor prognosis and aggressive and sometimes disfiguring treatments. The relationship intimacy model of couples' psychosocial adaptation proposes that relationship intimacy mediates associations between couples' cancer‐related support communication and psychological distress. Because the components of this model have not yet been evaluated in the same study, we examined associations between three types of cancer‐related support communication (self‐disclosure, perceived partner disclosure, and protective buffering), intimacy (global and cancer‐specific), and global distress among patients coping with either head and neck or lung cancer and their partners. Method: One hundred and nine patients undergoing active treatment and their partners whose average time since diagnosis was 15 months completed cross‐sectional surveys. Results: For both patients and their partners, multilevel analyses using the actor‐partner interdependence model showed that global and cancer‐specific intimacy fully mediated associations between self‐ and perceived partner disclosure and distress; global intimacy partially mediated the association between protective buffering and distress. Evidence for moderated mediation was found; specifically, lower levels of distress were reported as a function of global and cancer‐specific intimacy, but these associations were stronger for partners than for patients. Conclusions: Enhancing relationship intimacy by disclosing cancer‐related concerns may facilitate both partners' adjustment to these illnesses. Copyright © 2010 John Wiley & Sons, Ltd.     

Implementing touch‐screen technology to enhance recognition of distress

Objective: The University of California, San Diego, Moores Cancer Center implemented a systematic approach for patients to communicate with their health‐care team in real‐time regarding psychosocial problem‐related distress using touch‐screen technology. The purpose of this report is to describe our experience in implementing touch‐screen problem‐related distress screening as the standard of care for all outpatients in a health‐care setting. Although early identification of distress has recently gained wide attention, the practical issues of implementing psychosocial screening with and without the use of technology have not been fully addressed or investigated. Methods: ‘The How Can We Help You and Your Family?’ screening instrument was used to identify and address patient problem‐related distress for clinical services, program development, research and education. Using a HIPPA‐compliant approach, the touch‐screen technology also helped to identify patients interested in clinical trials and additional support services. Results: We found that the biggest barrier to implementing this technology was the attitude of the front desk staff (i.e. schedulers, clerks, administrative staff) who felt that the touch‐screen would be burdensome. Our experience suggested that it was essential to actively involve these personnel from the beginning of the planning process. As specifically acknowledged in the recent 2007 Institute of Medicine report (Cancer Care for the Whole Patient: Meeting Psychosocial Health Needs. The National Academies Press: Washington, DC, 2007), use of this computerized version of the screening instrument was able to bridge the gap between the detection of problem‐related distress and referrals for assessment or treatment. Conclusion: We found that it is feasible to implement a computerized problem‐related distress screening program in a comprehensive cancer center. Copyright © 2008 John Wiley & Sons, Ltd.     

Participation in patient support groups among cancer survivors: do psychosocial and medical factors have an impact?

A better understanding of the role of psychosocial resources and factors associated with participating in patient support groups appears to be important for the development and implementation of cancer survivorship care plans. We therefore investigated the frequency of participation in and satisfaction with patient support groups after completion of a rehabilitation programme and aimed to examine differences in demographic, medical and psychosocial characteristics between group participants and non‐participants. We further aimed to identify predictors of participation in patient support groups. A total of 1281 eligible patients (75.5% participation rate) were recruited on average 11 months post diagnosis and assessed at the beginning (t₁), at the end (t₂) and 12 months after rehabilitation (t₃). Study participants completed self‐report measures assessing support‐group participation and satisfaction, psychosocial distress (anxiety, fear of cancer recurrence, depression), social support, coping, quality of life, pain and treatment‐related characteristics. Sixty‐seven patients (7.6%) participated in a patient self‐help group. Being unemployed, undergoing an increased number of overall treatments, and a higher active emotion‐oriented coping style significantly predicted self‐help group participation; the predictive power of the multivariate logistic regression model was rather weak (Nagelkerke's R² = 0.07). Our data provide evidence that self‐help group participation in cancer patients may be largely related to other factors than medical or psychosocial distress.     

Psychological distress in women at risk for hereditary breast cancer: the role of family communication and perceived social support

Background: Hereditary breast cancer has a profound impact on individual family members and on their mutual communication and interactions. The way at‐risk women cope with the threat of hereditary breast cancer may depend on the quality of family communication about hereditary breast cancer and on the perceived social support from family and friends. Objective: To examine the associations of family communication and social support with long‐term psychological distress in a group of women at risk for hereditary breast cancer, who opted either for regular breast surveillance or prophylactic surgery. Methods: The study cohort consisted of 222 women at risk for hereditary breast cancer, who previously participated in a study on the psychological consequences of either regular breast cancer surveillance or prophylactic surgery. General and breast cancer specific distress, hereditary cancer‐related family communication, perceived social support, and demographics were assessed. Results: Using structural equation modelling, we found that open communication about hereditary cancer within the family was associated with less general and breast cancer specific distress. In addition, perceived support from family and friends was indirectly associated with less general and breast cancer‐specific distress through open communication within the family. Discussion: These findings indicate that family communication and perceived social support from friends and family are of paramount importance in the long‐term adaptation to being at risk for hereditary breast cancer. Attention for these issues needs to be incorporated in the care of women at risk for hereditary breast cancer. Copyright © 2010 John Wiley & Sons, Ltd.     

The process and effect of supportive message expression and reception in online breast cancer support groups

Objective: 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. Methods: 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 post‐test 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. Results: Hierarchical regression analyses revealed that those who receive higher levels of support from others have fewer breast cancer‐related concerns (β = ? 0.15, p<0.05), 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 = 0.16, p<0.05). In addition to these positive effects, partial correlation analysis indicated that these two supportive behaviors are reciprocal. Conclusions: 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. Copyright © 2011 John Wiley & Sons, Ltd.     

Bedarf,Kenntnis, Akzeptanz und Nutzung von psychosozialen Angeboten

Background

Colorectal cancer is the second most common form of cancer in Germany and for many of those affected is accompanied by psychosocial distress. The psychosocial care of cancer patients is nowadays an integral component of oncological treatment; however, it remains unclear whether the outpatient support provided covers the needs and reaches the affected patients.

Objective

Following an overview of the impairments of patients with colorectal cancer reported in the relevant literature, some of the results of this study are presented. The aim of the study was to establish whether the mental health (MH) outcomes, attitudes towards cancer-specific MH (CSMH) resources and the availability of such resources differ between rural and urban cancer patients.

Results

Although approximately one third of the patients had psychosocial impairments and approximately 10?% of the patients showed increased levels of anxiety and depression, the utilization of psychosocial support services was very low (<?2?%). Approximately 17?% of the patients questioned reported that they would certainly make use of such assistance. Despite a higher availability of CSMH resources, urban patients showed poorer doctor-patient relationships and less knowledge of such resources than rural patients. Overall, knowledge and use of these resources was poor.

Conclusion

The amount of psychosocial support facilities available appears to be less important than establishing an efficient communication network between patients, doctors and providers of CSMH resources in order to achieve satisfaction with treatment of urban and rural cancer patients.

     

Meta-analyses of the effect of false-positive mammograms on generic and specific psychosocial outcomes

Objectives: While a previous meta‐analysis found that false‐positive mammography results affect women's likelihood of returning for screening, effects on well being have yet to be meta‐analyzed. We investigated whether the effects of false‐positive mammograms on women's well‐being are limited to outcomes specific to breast cancer. Methods: We searched MEDLINE for studies of the psychosocial effects of false‐positive results of routine screening mammography. We pooled effect sizes using random effects meta‐analysis. Results: Across 17 studies (n=20 781), receiving a false‐positive mammogram the result was associated with differences in all eight breast‐cancer‐specific outcomes that we examined. These included greater anxiety and distress about breast cancer as well as more frequent breast self‐exams and higher perceived effectiveness of screening mammography. False positives were associated with only one of six generic outcomes (i.e. generalized anxiety), and this effect size was small. Conclusions: False‐positive mammograms influenced women's well‐being, but the effects were limited to breast‐cancer‐specific outcomes. Researchers should include disease‐specific measures in future studies of the consequences of false‐positive mammograms. Copyright © 2010 John Wiley & Sons, Ltd.