Feasibility and usefulness of the ‘Distress Screening Program in Ambulatory Care’ in clinical oncology practice

Objective: Although the implementation of routine screening for distress is desirable, doing so is difficult in today's busy clinical oncology practice. We developed the ‘Distress Screening Program in Ambulatory Care’ (DISPAC program) as a practical means of screening for and facilitating the treatment of major depression and adjustment disorders in cancer patients. This study assessed the feasibility and usefulness of the DISPAC program in actual clinical situations. Methods: As part of the DISPAC program, nurses administered a psychological screening measure, the Distress and Impact Thermometer (DIT), to consecutive cancer patients visiting an outpatient clinic in the waiting room. The attending physician then recommended psycho‐oncology service referral to all positively screened patients. We compared the proportion of patients referred to a psycho‐oncology service during the DISPAC period with the usual care period. Results: Of the targeted 491 patients treated during the DISPAC period, 91.9% (451/491) completed the DIT; the results were positive in 37.0% (167/451), recommendations for referrals were given to 93.4% (156/167), and 25.0% (39/156) accepted the referral. Ultimately 5.3% (26/491) of the targeted patients were treated by psycho‐oncology service as having major depression or adjustment disorders, a significantly higher proportion than during the usual care period (0.3%; p<0.001). The nurses required 132±58 s per person to administer the DIT. Conclusions: The DISPAC program is useful for facilitating the care of cancer patients with psychological distress. Nevertheless, the acceptance of referrals by patients and the reduction of the burden placed on nurses are areas requiring improvement. Copyright © 2009 John Wiley & Sons, Ltd.     

When peer support may be most beneficial: the relationship between upward comparison and perceived threat

Objective: Currently, the mechanism by which dyadic peer support programs may facilitate positive psychological adjustment for cancer patients is unclear. This study utilized social comparison theory to examine the effects of peer support on the psychological adjustment of women with breast cancer. Methods: A cross‐sectional survey of 251 recently diagnosed breast cancer patients (52% response), who had received a dyadic peer support intervention, was undertaken assessing anxiety, depression, perceived threat, and upward comparison. Results: Perceived cancer threat significantly moderated the relationship between positive upward comparison and depression levels (p = 0.017). Women who engaged in upward comparisons and who perceived their diagnosis to be more threatening had lower depression levels than women who were less threatened. Conclusions: Peer support services that provide support from cancer survivors may be especially beneficial for people who appraise their cancer diagnosis as more threatening. The application of theoretical models to future evaluation designs will further increase understanding of the psychological mechanisms involved in the effects of peer support and inform program development. Copyright © 2010 John Wiley & Sons, Ltd.     

The changing landscape of cancer care – the impact of psychosocial clinical practice guidelines

The International Psycho‐Oncology Society (IPOS) has championed the need for quality care to incorporate attention to the psychosocial concerns of cancer patients. Widespread international endorsement of distress as the ‘6th vital sign’ is a major step towards improving access to psychosocial care and reducing the isolation and stigma experienced by many affected by cancer. However, the integration of psychosocial care into routine clinical practice also requires active multidisciplinary engagement, and demonstration that evidence‐based psychosocial interventions are effective and feasible to deliver in practice. Clinical practice guidelines are valuable in this context. Typically, they provide a synthesis and evaluation of existing evidence, critically appraised by stakeholders and clinicians, presented in a way which allows for translation of research evidence into practice. Such guidelines are also tools for informing and educating those who do not have psychosocial expertise, potentially increasing the status of psycho‐oncology. This paper describes the background to the development of psychosocial clinical practice guidelines in Australia as a means of understanding the factors that can underpin the evolution of attitudes and integration of psychosocial care in oncology, and considers the current status of psychosocial care in Australia and internationally, including challenges for the future. Copyright © 2015 John Wiley & Sons, Ltd.     

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.     

2014 President's plenary international psycho‐oncology society: moving toward cancer care for the whole patient

The International Psycho‐oncology Society (IPOS) has just celebrated its 30th anniversary. The growth of psychosocial oncology has been exponential, and this relatively new field is becoming a core service that focuses on prevention, reducing the burden of cancer, and enhancing the quality of life from time of diagnosis, through treatment, survivorship, and palliative care. Looking back over the past 30 years, we see that cancer care globally has evolved to a new and higher standard. Today, ‘cancer care for the whole patient’ is being accomplished with an evidence‐based model that addresses psychosocial needs and integrates psycho‐oncology into the treatment and care of patients. The President's Plenary Session in Lisbon, Portugal, highlighted the IPOS Mission of promoting global excellence in psychosocial care of people affected by cancer through our research, public policy, advocacy, and education. The internationally endorsed IPOS Standard of Quality Cancer Care, for example, clearly states the necessity of integrating the psychosocial domain into routine care, and that distress should be measured as the sixth vital sign after temperature, blood pressure, pulse, respiratory rate, and pain. The plenary paper also discussed the global progress being made in Europe, North America, and Australia in providing quality cancer care for the whole patient. Collaborative partnerships between IPOS and organizations such as the European Partnership Action Against Cancer and the World Health Organization are essential in building capacity for the delivery of high‐quality psycho‐oncology services in the future. Copyright © 2015 John Wiley & Sons, Ltd.     

Psychosocial interventions for adolescent cancer patients: a systematic review of the literature

Objective: Both cancer diagnosis and the consequent treatment are particularly challenging for adolescent patients. Adjuvant psychological interventions to reduce cancer‐related distress are therefore a fundamental part of a multidisciplinary treatment. Assuming that psycho‐oncology has to consider developmentally specific aspects, this review summarizes empirical studies of the efficacy and effectiveness of psychosocial interventions for adolescent cancer patients. Methods: Electronic searches were conducted in four databases. Studies were included only if they were exclusively designed for adolescent cancer patients and incorporated a defined outcome measure to evaluate the effects of the implemented intervention. Results: Only four studies fulfilled the inclusion criteria. One of those studies reported a significant improvement compared with a waitlist control group. The relevant gains were found in the overall level of distress, as well as in additional outcome variables such as knowledge of sexual issues, body image and anxiety about psychosexual issues. The remaining studies revealed no significant changes related to psychological distress and psychosocial functioning. Conclusion: Taken together, the findings point out that there is a lack of intervention research in psycho‐oncology with adolescents. So far, there is only limited evidence for the effectiveness of psychosocial interventions to improve coping with cancer‐associated problems in adolescent patients. Future research needs to be done in this population. In order to establish more conclusive results, larger samples and interventions particularly designed for adolescent patients ought to be studied. Copyright © 2008 John Wiley & Sons, Ltd.     

Socio-demographic, psychosocial and attitudinal predictors of help seeking after cancer diagnosis

Objective: The objective is to describe cancer patients' patterns of use of psychosocial support services and identify socio‐demographic, psychosocial, and attitudinal predictors of service utilization. Methods: A cross‐sectional survey of 439 cancer patients (61.2% response) at a regional tertiary cancer center assessed patterns of support service utilization, cancer‐specific distress, social support and constraints, and attitudes to help seeking. Results: Patients less frequently received advice about psychosocial support in comparison with treatment‐related information. More than half the respondents were aware of social work support, support groups, and chaplain support; however, most did not utilize these services. For unaware patients, up to 47% would have utilized support services if they had known of their existence. The use of services was significantly related to being female, younger, and having greater cancer‐specific distress, more positive and less negative attitudes to help seeking. Future intention to contact a health professional for psychological support was predicted by more positive subjective norms and outcome expectations, higher cancer‐specific distress, and less negative attitudes to help seeking. Conclusion: Initiatives that encourage distressed patients to use psychosocial care services should highlight positive outcomes. Educational programs for health professionals to support psychosocial care in oncology are needed. Copyright © 2008 John Wiley & Sons, Ltd.     

Online support groups offer low‐threshold backing for family and friends of patients with prostate cancer

A prostate cancer diagnosis affects not only the patients but also their family and friends. We performed a secondary analysis of a survey of users of the largest German online support group (OSG) for prostate cancer. We collected socio‐demographic, psychological and disease‐related data over a three‐month period in 2013. Among 769 participants with a complete questionnaire, 686 were patients, and 83 were family members and friends of other patients. The family and friends group comprised 33% spouses, 31% children and 36% people with other relationships to the patient (“others”). Compared to the patient group, the family and friends group showed higher scores for anxiety and depression and described a higher rate of metastatic disease in the patients with whom they had a relationship. The children of patients showed the highest psychological burden based on their scores for anxiety and depression. Only 7% of spouses and none of the children attended face‐to‐face support groups, compared to 70% of people in the “others” group. OSGs offer low‐threshold support for family members and friends; specifically, they meet the needs of spouses and children who do not attend face‐to‐face support groups. To improve counselling efforts, physicians should be aware of this online resource.     

Factors influencing engagement in an online support group for family caregivers of individuals with advanced cancer

Abstract

Objective: To explore factors that influenced engagement in an online support group (OSG) for family caregivers of hospice patients with cancer.

Design: Secondary qualitative data analysis.

Sample: 58 family caregivers of hospice patients with advanced cancer.

Methods: Template analysis of individual family caregiver interviews.

Findings: Emotional isolation and caregiving downtime positively influenced engagement, while reluctance to share personal information, a short timeframe of participation in the OSG, and caregiving commitments were negatively influential. While the group facilitation and secure privacy settings of the OSG were viewed positively, reactions to the OSG platform and group tone were mixed. Information on pain and the dying process was found to be particularly engaging.

Practice implications: Providers offering OSGs for family caregivers should maximize factors that promote meaningful member engagement, responding to changes in activity and tone over time.     

The clinical value of quality of life assessment in oncology practice-a qualitative study of patient and physician views

Background: Patients' self‐reported questionnaires measuring symptoms, functioning and quality of life (QOL) can help physicians to screen and monitor patient problems in oncology practice. Although many self‐reported questionnaires have been developed, their role in clinical practice remains unclear. This study explores what oncologists and patients need from QOL questionnaires, what their clinical value is and generates recommendations how to improve the questionnaires for use in oncology practice. Methods: Focus groups were conducted in the Leeds Cancer Centre (St James's and Cookridge hospitals, UK), with 31 patients (9 groups) and 16 oncologists (4 groups). Twenty patients completed a questionnaire. Framework analysis was employed for the analysis. Results: Patients and physicians wanted the questionnaires to cover: common symptoms and problems (e.g. pain, fatigue), disease and treatment‐specific issues (common for patients with similar diagnosis and/or treatment), individual patient‐specific issues (usually non‐physical, e.g. prognosis, family issues, sexuality) were important to some patients and relevant at specific points in the cancer journey. The timing and scope of enquiry should be flexible and correspond to disease and treatment stages. A model for measurement in clinical practice is proposed combining standard questionnaires with disease/treatment‐specific items and a prompt list of items, aiming to facilitate discussion of individual‐specific issues and minimize patient burden. Patients' and physicians' views on the clinical value of this approach are described. Conclusions: The findings emphasized the need for individualized assessment alongside standard measures, for flexible measurement adapted to treatment and follow‐up, for clear interpretation of scores and decision guidelines. Copyright © 2007 John Wiley & Sons, Ltd.     

The effectiveness of a psycho‐educational group after early‐stage breast cancer treatment: results of a randomized French study

Background: Many women with breast cancer need psychological help to cope more effectively after treatment. Cognitive and behavioural techniques are not yet well established in France. A multi‐site randomized study was conducted to evaluate the effects of a psycho‐educational group intervention in this population. Methods: Two hundred and three patients, recruited after primary treatment, were randomly assigned either to a treatment group (psycho‐educational intervention) or to a waiting‐list control group. The 8‐week programme of 2 h sessions comprised of thematic discussions, information and training in stress management techniques. Evaluation at baseline, after 8 sessions, and 1 month after programme completion, included evaluations using the STAI, POMS, MAC, EORTC QLQ‐C30 and EORTC QLQ‐BR23 breast module scales. Results: We observed a significant reduction in anxiety (STAI, POMS) among group participants, a reduction in anger, depression and fatigue (POMS), a significant improvement in vigor and interpersonal relationships (POMS), in emotional and role functioning, in health status and fatigue level (EORTC QLQ‐C30). In contrast, coping strategies (MAC) were not significantly different between groups. No group‐related negative effects were observed and the global satisfaction levels were very high. Conclusion: This study demonstrates the feasibility and effectiveness of a psycho‐educational intervention, which can accelerate the reduction of those negative affects which are present at the end of treatment. It represents an excellent complement or an alternative to individual psycho‐oncologic therapeutic support, widely proposed in France, and should now be tested in groups with other types of cancer and at other disease phases. Copyright © 2008 John Wiley & Sons, Ltd.     

Psycho‐oncology assessment in Chinese populations: a systematic review of quality of life and psychosocial measures

This systematic review describes psychosocial and quality of life (QOL) measures used in psycho‐oncology research with cancer patients and caregivers in China. Medline and PsycINFO databases were searched (1980–2014). Studies reviewed met the following criteria: English language; peer‐reviewed; sampled Chinese cancer patients/caregivers; developed, validated or assessed psychometric properties of psychosocial or QOL outcome measures; and reported validation data. The review examined characteristics of measures and participants, translation and cultural adaptation processes and psychometric properties of the measures. Ninety five studies met review criteria. Common characteristics of studies reviewed were they: assessed primarily QOL measures, sampled patients with breast, colorectal, or head and neck cancer, and validated existing measures (>80%) originating in North America or Europe. Few studies reported difficulties translating measures. Regarding psychometric properties of the measures >50% of studies reported subscale reliabilities <α = 0.70, <50% reported test–retest reliability, and <30% reported divergent validity. Few reported sensitivity, specificity or responsiveness. Improved accuracy and transparency of reporting for translation, cultural adaptation and psychometric testing of psychosocial measures is needed. Developing support structures for translating and validating psychosocial measures would enable this and ensure Chinese psycho‐oncology clinical practice and research keeps pace with international focus on patient reported outcome measures and data management.     

'The greatest thing in the world is the family': the meaning of social support among black Caribbean and white British patients living with advanced cancer

Purpose: Little is known about the perceptions and meanings of social support among black and minority ethnic groups living with advanced cancer in the UK. The aim of this study was to explore social support networks and their meaning among Black Caribbean and White British patients living with advanced cancer. Method: Semi‐structured interviews were conducted with 26 Black Caribbean and 19 White British cancer patients and analysed using the framework approach. Results: In all, 25 of 26 Black Caribbean and 18 of 19 White British participants volunteered views on the presence of social support in their lives. The presence of a spouse or partners was an indispensable feature within the social support networks in both ethnic groups. More Black Caribbean than White British participants referred to the presence of social networks made through their church communities as being a source of practical and emotional support. Conclusions: We recommend that when health and social‐care professionals perform an assessment interview with patients from cultural backgrounds different to their own, opportunities should be made for patients to express information about their social support networks. This will help them to better understand their place alongside statutory services. Spouses and partners should be given greater recognition of their contribution in order to continue with their important role. Copyright © 2011 John Wiley & Sons, Ltd.     

Coping with cancer: a brief report on stress and coping strategies in medical students dealing with cancer patients

Background: This pilot study explored factors associated with stress in medical students during their initial clinical contact with cancer patients, in particular identifying stress levels and coping strategies used. Methods: A total of 80 medical students at The University of Birmingham Medical School, UK, completed retrospective self‐report questionnaires measuring socio‐demographics, potential stressors and coping strategies (using the Brief COPE inventory). Statistical analysis followed data collection. Findings: Of all socio‐demographic categories, female gender correlated with the highest stress score (p<0.05). The most stressful situations reported related to the patient's condition, the biopsychosocial effects of the cancer on the patient and his/her family, and breaking bad news. A combination of problem‐ and emotion‐focussed strategies were used to manage stress; and the extent of their usage was significantly related to individual stress levels (p<0.01) in both instances. Interpretation: Medical students in an oncology setting experience moderate stress and utilise a combination of problem‐ and emotion‐focussed coping strategies to combat this stress. A greater use of both coping strategies was seen in students experiencing higher levels of stress. This may suggest a relative lack of effective coping skills. In light of this, the implementation of coping strategy training as a part of the medical course and/or support groups may be beneficial. Copyright © 2010 John Wiley & Sons, Ltd.     

Motives that cancer patients in oncological care have for consulting a psychologist—an empirical study

Objective: Most people with cancer are able to deal with the mental turmoil with support from ordinary health care, family and friends. However, by themselves or by attentive health‐care workers some patients are referred to specialists within the psychosocial field, foremost social workers and psychologists. This paper deals with patients' motives for seeing a psychologist. Methods: The case books for all patients who had met with the psychologist at a department of oncology in Sweden during a 10‐year period were read through and categorised according to what the patients wanted to talk about. Results: The most commonly found motives were in sliding order: coping with anxiety and worries caused by the disease; dealing with relational problems in life outside the disease; dealing with relational problems actualised by the disease; living with a malignant disease‐despair in a new life situation; and finally dealing with a particular problem. Conclusion: Patients seeing a psychologist in oncology do not just ask for help to come to terms with anxiety and worries. More than a third of the patients wanted to talk about distressing relationships, which were not connected to, or only remotely connected to the cancer disease. Patients have different needs and competence in different psychological treatment perspectives is therefore important. The found diversity of motives bears impact on the external validity of screening instruments for distress and randomised controlled intervention studies. Copyright © 2009 John Wiley & Sons, Ltd.     

Development of guidelines for distress management in Korean cancer patients

Objectives: Psychological distress is common in cancer patients, and the need to develop a system for assessing and managing distress is widely recognized. This project developed recommendations that are feasible for Korean cancer patients and the Korean healthcare system. Methods: Based on the findings from a series of studies in the context of this project, we developed guidelines following the steps and parameters recommended by the Scottish Intercollegiate Guidelines Network (SIGN). The Development Group consisted of individuals from several professions, including psychiatrists, psychologists, nurses, social workers, a health policy expert, and a methodologist. Opinions from various healthcare providers, patients, and related societies were also reflected in the guidelines. Results: The main recommendations for distress management in cancer patients were the following: (1) a concept of distress in Korean cancer patients, screening tools, management algorithms, and triage approaches was developed and (2) four symptom‐specific guidelines with management algorithms were proposed for depression, anxiety, insomnia, and delirium. Conclusion: This is the first effort to develop recommendations for distress management in psycho‐oncology in Korea. These guidelines offer standards for psychosocial care for cancer patients in Korea. We have made a significant step toward integrated cancer care that incorporates the psychosocial care of patients as an essential component of patient care in a Korean oncology context. This version will be updated constantly to keep up with emerging evidence from empirical research and clinical experience. Copyright © 2011 John Wiley & Sons, Ltd.     

‘I know they are distressed. What do I do now?’

Significant advances have been made in our understanding of psychological adjustment to cancer over the last 40 years. Most clinicians now recognise the importance of psychosocial factors and the need for skills in emotional support. In the first phase of psycho‐oncology, pioneering work in the 1970s and 1980s mapped the extent of psychological morbidity in cancer. This has been followed by a second phase where clinical trials have demonstrated that psychological treatments are effective. But although clinicians may feel more confident in identifying distress and listening to the patient, they rarely feel confident that they possess the skills to help. This paper will review the progress through the first two phases and argue that we are now in the third phase where we can begin to examine methods for delivering cost‐effective psychological care. One of these methods is to equip staff with basic skills to understand and manage psychological distress. This paper will also describe a programme over the last 10 years to evaluate the effectiveness and clinical impact of such training for palliative care professionals. Copyright © 2013 John Wiley & Sons, Ltd.     

2016 President's Plenary International Psycho‐Oncology Society: challenges and opportunities for growing and developing psychosocial oncology programmes worldwide

Consistent with the International Psycho‐Oncology Society's (IPOS) vision and goals, we are committed to improving quality cancer care and cancer policies through psychosocial care globally. As part of IPOS's mission, upon entering “Official Relations” for a second term with the World Health Organization (WHO), IPOS has dedicated much attention to reaching out to countries, which lack formalized psychosocial care programmes. One of IPOS's strategies to accomplish this goal has been to bring psycho‐oncology training programmes to low‐ and middle‐income countries and regions. To this end, the IPOS Board approved a new position on the Board of Directors for a member from a low‐ to middle‐income country (LMIC). The IPOS 2016 President's Plenary focused on challenges and opportunities that exist in growing and developing psychosocial oncology programmes worldwide . The plenary presentations highlight how IPOS and WHO have aligned their goals to help LMICs support cancer patients as an essential element of cancer and palliative care. IPOS country representatives are strongly supported in liaising with national health authorities and with WHO Country Representatives in LMICs. The plenary speakers discussed the role IPOS Federation has taken in building a global network of psychosocial leaders and the impact this had in assisting LMICs in meeting IPOS's psychosocial care objectives. The plenary highlighted the challenges of expanding psychosocial reach into these countries. One significant question remains: Can psychosocial guidelines be adapted to LMICs and regions?     

‘We are survivors too’: African‐American youths' experiences of coping with parental breast cancer

Objective: To explore how African‐American youth cope with the diagnosis and treatment of parental breast cancer, and to identify culturally sensitive ways to recruit and sustain participation of this vulnerable population in intervention programs. Methods: Three qualitative focus groups which were part of a larger study were conducted with 12 African‐American youth between the ages of 11 and 18, currently coping with parental breast cancer from the Northeastern part of the United States. Interviews were audio‐taped and transcribed verbatim, and analyzed using content analysis. Results: African‐American youth described fear and uncertainty about the mortality of their parent, their unpredictable future, and discomfort in negotiating breast cancer's relationship with the entire family. Four primary themes emerged which were coping with cancer, it affects us too, changes in family functioning, and growth through pain. African‐American youth described feeling overlooked by their families and oncology staff treating their parents, often being in the role of protecting their parents physically and emotionally. Conclusions: This study suggests that clinicians can improve the care of African‐American breast cancer patients and their adolescent children by being more family‐centered. Adolescents need more developmentally appropriate preparation for the family changes likely to occur when a parent is diagnosed and treated for breast cancer. Developing a support group comprised of other youth coping with parental breast cancer from diagnosis throughout treatment was described as a preferred intervention to promote a shared understanding in order to overcome feelings of isolation, worry, and fear. Copyright © 2010 John Wiley & Sons, Ltd.