Psycho-oncology Professionals Research Articles

Development and user testing of a patient decision aid for cancer patients considering treatment for anxiety or depression

BackgroundDespite high rates of mental health disorders among cancer patients, uptake of referral to psycho-oncology services remains low. This study aims to develop and seek clinician and patient feedback on a patient decision aid (PDA) for cancer patients making decisions about treatment for anxiety and/or depression.MethodsDevelopment was informed by the International Patient Decision Aid Standards and the Ottawa Decision Support Framework. Psycho-oncology professionals provided feedback on the clinical accuracy, acceptability, and usability of a prototype PDA. Cognitive interviews with 21 cancer patients/survivors assessed comprehensibility, acceptability, and usefulness. Interviews were thematically analysed using Framework Analysis.ResultsClinicians and patients strongly endorsed the PDA. Clinicians suggested minor amendments to improve clarity and increase engagement. Patient feedback focused on clarifying the purpose of the PDA and improving the clarity of the values clarification exercises (VCEs).ConclusionsThe PDA, the first of its kind for psycho-oncology, was acceptable to clinicians and patients. Valuable feedback was obtained for the revision of the PDA and VCEs.

Study protocol of the BLANKET trial: a cluster randomised controlled trial on the (cost-) effectiveness of a primary care intervention for fear of cancer recurrence in cancer survivors

IntroductionMany successfully treated patients with cancer suffer from fear of cancer recurrence (FCR), affecting their quality of life and their physical, emotional, cognitive and social functioning. Effective psychological interventions for...

Developing a treatment summary and survivorship care plan responsive to African-American breast cancer survivors.

Psycho-Oncology Psycho-Oncology (2015) Published online in Wiley Online Library (wileyonlinelibrary.com). DOI: 10.1002/pon.3939 Clinical Correspondence Developing a treatment summary and survivorship care plan responsive to African-American breast cancer survivors Kimlin Tam Ashing 1 *, Lily Lai 2 , Shirley Brown 3 , Kommah McDowell 3 , DeBorrah Carter 3 , June Smith 3 , Eudora Mitchell 3 , Rhonda H. Santifer 3 , Virginia Martin 3 , Betty Betts-Turner 3 , Odicie Fielder 4 and Vanessa Miller 5 CCARE, City of Hope National Medical Center, Duarte, CA, USA Department of Surgery, City of Hope National Medical Center, Duarte, CA, USA African American Cancer Coalition, Altadena, CA, USA Department of Clinical Oncology, City of Hope National Medical Center, Duarte, CA, USA Texas Christian University, Forth Worth, TX, USA *Correspondence to: CCARE, City of Hope National Medical Center, 1500 E Duarte Road, Duarte, CA 91010-3000, USA. E-mail: kashing@coh.org Received: 18 December 2014 Revised: 18 May 2015 Accepted: 15 July 2015 Dear Editor, Background African–American breast cancer survivors (AABCS) are understudied in the emerging survivorship care planning (treatment summary and survivorship care plan, TSSCP) literature. This article presents our TSSCP-African–American breast cancer (AABC) template, initially informed by a consensus review panel of survivor-advocates [1], and now in a format that is available for clinical application cultural, clinical, and socioecological modifications to the American Society of Clinical Oncology (ASCO) [4] Breast Cancer Adjuvant Treatment Plan and Summary and Survivorship Care Plan (v3 10/09) [5]. These advocates challenged the one-size-fits-all approach to TSSCPs and put forth recommendations towards the creation of a more patient-centered TSSCP that considers disease, clinical, and cultural characteristics for African– Americans. Based on this process, the TSSCP-AABC template was developed. TSSCP-AABCS evaluation Methods Methodological framework This project to develop a TSSCP-AABC template employed a two-phase, mixed-methods [2] design with an informative consensus panel to inform the initial TSSCP-AABC template. In this second phase, our stepwise approach towards the TSSCP template creation used a shared care model [3]. This model includes activated patients who joined oncology and primary care providers who provided input and evaluation to make available this current TSSCP-AABC template. Development of treatment summary and survivorship care plan The preliminary informative phase of the development of the TSSCP is described in detail elsewhere [1]; AABCS (N = 25) and community health advocates (N = 3) participated in three facilitated, structured, and informa- tive forums to review and provide input on relevant Copyright © 2015 John Wiley & Sons, Ltd. Participants Sixty healthcare professionals from research-based medical centers, community oncology and general medi- cal practices, and nurses associations were identified by the advocates and members of the first phase informative consensus team and recruited via mail or e-mail to be evaluators of the TSSCP-AABC template. Forty-two healthcare professional evaluators including oncology physicians (N = 5), primary care physicians (N = 2) psycho-oncology professionals (N = 3), oncology nurses (N = 5), and primarily care setting nurse practitioners (N = 27); and 12 survivor-advocates participated in this review and evaluation of the TSSCP-AABC (N = 54). The response rate for professionals was about 78%; the response for the advocates was about 92%. Each evaluator gave their informed consent prior to the inclusion in this study. All professional evaluators had at least 4 years experience serving diverse populations of cancer survivors with a focus on underserved and ethnic minority patients including AABCS.

A Qualitative Investigation of Health Care Professionals', Patients' and Partners' Views on Psychosocial Issues and Related Interventions for Couples Coping with Cancer.

IntroductionThere is growing evidence that cancer affects couples as an interdependent system and that couple-based psychosocial interventions are efficacious in reducing distress and improving coping skills. However, adoption of a couples-focused approach into cancer care is limited. Previous research has shown that patients and partners hold differing views from health care professionals (HCPs) regarding their psychosocial needs, and HCPs from different disciplines also hold divergent views regarding couples’ psychosocial needs. This study aimed to explore the perspectives of HCPs and couples on the provision of couple-focused psychosocial care in routine cancer services.MethodsA qualitative study using semi-structured interviews was undertaken with 20 HCPs (medical oncologists, nurses, psycho-oncology professionals) and 20 couples where one member had been diagnosed with cancer (breast, prostate, head/neck, bowel, multiple myeloma). Interviews were analysed using the framework approach.ResultsThree core themes were identified: “How Do Couples Cope with Cancer?” emphasised the positive and negative coping strategies used by couples, and highlighted that partners perceived a lack of engagement by HCPs. “What Is Couple-focused Psychosocial Care for People with Cancer?” described varying perspectives regarding the value of couple-focused psychosocial care and variation in the types of support couples need among HCPs and couples. Whereas most couples did not perceive a need for specialist couple-focused support and interventions, most HCPs felt couple-focused psychosocial care was necessary. “How Can Couple-Focused Psychosocial Care be Improved?” described couples’ view of a need for better provision of information, and the importance of their relationship with oncology clinicians. HCPs identified a lack of confidence in responding to the emotional needs of couples, and barriers to providing psychosocial care, including challenges identifying distress (through screening) and referring distressed individuals/couples for specialist assessment.ConclusionsThe three core themes revealed discrepancies about couple-focused psychosocial care between HCPs and couples, and HCPs from different professional backgrounds, and several barriers to the provision of psychosocial care for couples. Despite HCPs and couples acknowledging that a couple-focused approach to psycho-social support was potentially beneficial, the majority of couples did not feel they needed specific couple-focused interventions. These issues and recommendations for future research are discussed.

2013 President's Plenary International Psycho-oncology Society: embracing the IPOS standards as a means of enhancing comprehensive cancer care.

The second President's Plenary at the 2013 International Psycho-oncology Society's World Congress in Rotterdam, the Netherlands aimed to progress and, where needed, initiate changes to achieve comprehensive cancer care. Recent initiatives have been driven by the need to see psychosocial care as an integrated part of holistic multidisciplinary quality cancer care. The President's Plenary session covered the need for the following: An internationally agreed standard of quality cancer care, which includes psychosocial care for patients and their families and caregivers. An endorsement to assess distress as the 6th vital sign. Psycho-oncology professionals to integrate into a federation promoting better national and international outcomes. This overview highlights progress in terms of enhanced communication between and within different professionals groups supporting the implementation of a model of comprehensive patient care that is inclusive of psychosocial support and screening for distress. Tasks and challenges for the future are set out but the primary message is of the importance of collaboration in order to achieve recognition that psychosocial care is integrated into comprehensive cancer care; in this way, patient, family and carer needs can be more appropriately met.

ACE Project—Advocating for Clinical Excellence: Creating Change in the Delivery of Palliative Care

Psychologists, social workers, and spiritual care professionals report inadequate preparation to maximize their effectiveness in advocating for institutional reform to meet oncology patients' diverse bio-psychosocial-spiritual and cultural needs. This article provides an overview of the ACE Project, a National Cancer Institute, 5 year, R25-funded transdisciplinary palliative care education program designed to enhance the advocacy and leadership skills of 301 competitively selected psycho-oncology professionals. ACE Project participants identified an institutional goal, refined their goals during the course and received mentorship and support throughout the subsequent year. Participants were invited to return to a Reunion Conference in year five to report on their activities, network, and share the results of their change efforts. A subset of 28 ACE Project participants contributed to this OMEGA special issue. Participants' goals primarily focused on strategies to improve clinical care through program development and improvements in palliative care education within their institutions. The results of this transdisciplinary leadership skills-building program for psycho-oncology professionals affirm the feasibility and perceived need for the program. See the ACE Project website (http://www.cityofhope.org/education/health-professional-education/nursing-education/ACE-project/Pages/default.aspx) for additional program information.

Editorial: Changing the Change Agents through Palliative Care Education for Psycho-Oncology Professionals

This special issue of OMEGA celebrates the institutional change efforts of 28 selected psychologists, social workers, and spiritual care professionals who participated in the ACE Project, a transdisciplinary palliative care education program funded through the National Cancer Institute (2006-2012). Participants reflect the three disciplines targeted by this educational grant and report on the institutional change efforts that emerged from their ACE Project activities. An article describing the ACE Project is followed by articles that address the participants’ work to enhance collaborative palliative practice, address the concerns of diverse populations, integrate spiritual and existential care into palliative care, and their efforts to improve the delivery of end-of-life and bereavement support services within their institutions. The articles that follow are authored by 28 ACE Project participants who responded to an invitation to share their work through this special issue. Many of these authors are being published for the first time and each reported that the experience of being a part of the ACE Project inspired them to more formally disseminate their work through additional venues.

2012 President's Plenary International Psycho‐Oncology Society: future directions in psycho‐oncology

AbstractThe inaugural President's Plenary was held at the 2012 International Psycho‐oncology Society's World Congress in Brisbane to provide a platform for dissemination of important initiatives and achievements of interest to cancer professionals globally. The vision of the International Psycho‐oncology Society – clarified and defined in 2004 – is that all cancer patients and their families throughout the world should receive optimal psychosocial care at all stages of disease and survivorship. Recent initiatives have been driven by the need to see psychosocial care available as a seamless part of holistic multidisciplinary quality cancer care and life‐extending lifestyle changes promoted and supported through the expertise of behavioural and social scientists. In keeping with World Health Organization targets that there is ‘no health without mental health’, cancer health must include mental health. This is in line with the patients' declaration to ‘See us – not our disease’. The aim is to ensure that within the next decade, psychosocial care is acknowledged as a vital part of the patient journey and accepted globally as good practice within cancer care. The President's Plenary session covered the need for the following:Behavioural and social scientists to be integral to the planned lifestyle changes that the United Nations agreed, at a high‐level meeting in 2011, to reduce world cancer incidence and morbidity over the next decade;An internationally agreed standard of quality cancer care that includes psychosocial care for patients and their families and carers;An endorsement to assess distress as the 6th vital sign;A declaration that mental health within cancer health is a human right;Psycho‐oncology professionals to integrate into a federation promoting better national and international outcomes; strength in numbers speaking with a unified voice.The aim is to encourage dialogue between all cancer professionals and patient representatives to progress these targets; everyone has a voice. Copyright © 2013 John Wiley & Sons, Ltd.

The impact of information given to patients’ families: Breast cancer risk notification

A family history of breast cancer is a clear risk for developing the disease. Therefore, when a woman is diagnosed with breast cancer all her female first degree relatives become population at risk. This involve a number of important aspects to be taken into account by psychooncology professionals. (a) First, in addition to the stress associated with the diagnosis and treatment of breast cancer in a close relative, first degree relatives of breast cancer patients have the added stress of learning that they are at risk of this disease. (b) Second, these women become the main target of secondary breast cancer prevention strategies. However, various reports show that a considerable percentage of these women do not follow the recommended screening methods. For this reason, it is necessary to study the possible contribution of psychosocial factors, specially health beliefs, in the practice of preventive behavior aimed at preventing breast cancer in this population, and to design strategies to promote preventive practices. (c) Most of the research on health beliefs among women at risk for breat cancer has focused on risk perception.This research as found that some women with a family history of breast cancer have significantly overestimated their risk, while other shave underestimated their risk. The need to provide risk counselling schemes for these women is therefore proposed, in order to estimate and advise them of their real risk. (d) Finally, these women may request genetic testing to determine whether they carry genetic mutations (BRCA1, BRCA2, or others) that cause some types of breast cancer. However, it must be remembered that, although many first degree relatives will have heard of and seek «the cancer gene test», currently testing is appropiate and available only for rare individuals. All these issues are reviewed in the present paper.

An overview of the ACE Project-advocating for clinical excellence: transdisciplinary palliative care education.

Excellence in palliative care demands attention to the multidimensional aspects of patient and family suffering, yet too few psycho-oncology professionals report adequate preparation in this vital area. A total of 148 competitively selected psychologists, social workers, and spiritual care professionals participated in intensive educational courses to enhance their palliative care delivery, leadership, and advocacy skills. Extensive process and outcome evaluations measured the effectiveness of this educational program. To date, 2 national courses have been completed. The courses received strong overall evaluations, with participants rating increased confidence in defined palliative care skills. The initial results of this innovative National Cancer Institute-funded transdisciplinary training for psycho-oncology professionals affirm the need and feasibility of the program. See the Advocating for Clinical Excellence Project Web site (www.cityofhope.org/ACEproject) for additional course information.