A randomised trial of a psychosocial intervention for cancer patients integrated into routine care: The PROMPT study (promoting optimal outcomes in mood through tailored psychosocial therapies)

Background Despite evidence that up to 35% of patients with cancer experience significant distress, access to effective psychosocial care is limited by lack of systematic approaches to assessment, a paucity of psychosocial services, and patient reluctance to accept treatment either because of perceived stigma or difficulties with access to specialist psycho-oncology services due to isolation or disease burden. This paper presents an overview of a randomised study to evaluate the effectiveness of a brief tailored psychosocial Intervention delivered by health professionals in cancer care who undergo focused training and participate in clinical supervision. Methods/design Health professionals from the disciplines of nursing, occupational therapy, speech pathology, dietetics, physiotherapy or radiation therapy will participate in training to deliver the psychosocial Intervention focusing on core concepts of supportive-expressive, cognitive and dignity-conserving care. Health professional training will consist of completion of a self-directed manual and participation in a skills development session. Participating health professionals will be supported through structured clinical supervision whilst delivering the Intervention. In the stepped wedge design each of the 5 participating clinical sites will be allocated in random order from Control condition to Training then delivery of the Intervention. A total of 600 patients will be recruited across all sites. Based on level of distress or risk factors eligible patients will receive up to 4 sessions, each of up to 30 minutes in length, delivered face-to-face or by telephone. Participants will be assessed at baseline and 10-week follow-up. Patient outcome measures include anxiety and depression, quality of life, unmet psychological and supportive care needs. Health professional measures include psychological morbidity, stress and burnout. Process evaluation will be conducted to assess perceptions of participation in the study and the factors that may promote translation of learning into practice. Discussion This study will provide important information about the effectiveness of a brief tailored psychological Intervention for patients with cancer and the potential to prevent development of significant distress in patients considered at risk. It will yield data about the feasibility of this model of care in routine clinical practice and identify enablers and barriers to its systematic implementation in cancer settings.

Cancer-related psychosocial research : what are the perspectives of cancer care centre users on participation?

Purpose To explore the perspectives of cancer care centre users on participation in psychosocial research to inform research design and ethics. Methods The study is based on a qualitative research design. Fourteen semistructured interviews were carried in people diagnosed with cancer and carers. The interview included four main questions about practical barriers to participation, types of research design, motivating factors and the conduct of research in a cancer care support setting. The data were analysed using qualitative content analysis. Results Interviewees demonstrated a willingness to participate in psychosocial research within certain circumstances. There were no practical barriers identified, although they considered payment for research-related travel important. The most acceptable research design was the face-to-face interview and the least preferred was the randomised control trial. The factors that motivated participation were altruism, valuing research, and making a contribution to the centre. Interviewees supported the conduct of research in cancer care support centres conditional upon delaying recruitment during the initial months of users’ visits and its need to be discreet to avoid deterring visitors from accessing the centre. Conclusions The study concludes that the personal interaction between participants and researchers is the most important feature of decision-making by patients/carers to join studies. Taking into account the perspectives of people affected by cancer during the early stages of research design may enhance recruitment and retention and can contribute to the development of research protocols and ethics.

Circles of care : should community development redefine the practice of palliative care?

Specialist palliative care, within hospices in particular, has historically led and set the standard for caring for patients at end of life. The focus of this care has been mostly for patients with cancer. More recently, health and social care services have been developing equality of care for all patients approaching end of life. This has mostly been done in the context of a service delivery approach to care whereby services have become increasingly expert in identifying health and social care need and meeting this need with professional services. This model of patient centred care, with the impeccable assessment and treatment of physical, social, psychological and spiritual need, predominantly worked very well for the latter part of the 20th century. Over the last 13 years, however, there have been several international examples of community development approaches to end of life care. The patient centred model of care has limitations when there is a fundamental lack of integrated community policy, development and resourcing. Within this article, we propose a model of care which identifies a person with an illness at the centre of a network which includes inner and outer networks, communities and service delivery organisations. All of these are underpinned by policy development, supporting the overall structure. Adoption of this model would allow individuals, communities, service delivery organisations and policy makers to work together to provide end of life care that enhances value and meaning for people at end of life, both patients and communities alike.

Improving national hospice/palliative care service symptom outcomes systematically through point-of-care data collection, structured feedback and benchmarking

PURPOSE Every health care sector including hospice/palliative care needs to systematically improve services using patient-defined outcomes. Data from the national Australian Palliative Care Outcomes Collaboration aims to define whether hospice/palliative care patients' outcomes and the consistency of these outcomes have improved in the last 3 years. METHODS Data were analysed by clinical phase (stable, unstable, deteriorating, terminal). Patient-level data included the Symptom Assessment Scale and the Palliative Care Problem Severity Score. Nationally collected point-of-care data were anchored for the period July-December 2008 and subsequently compared to this baseline in six 6-month reporting cycles for all services that submitted data in every time period (n = 30) using individual longitudinal multi-level random coefficient models. RESULTS Data were analysed for 19,747 patients (46 % female; 85 % cancer; 27,928 episodes of care; 65,463 phases). There were significant improvements across all domains (symptom control, family care, psychological and spiritual care) except pain. Simultaneously, the interquartile ranges decreased, jointly indicating that better and more consistent patient outcomes were being achieved. CONCLUSION These are the first national hospice/palliative care symptom control performance data to demonstrate improvements in clinical outcomes at a service level as a result of routine data collection and systematic feedback.

Adverse breast cancer treatment effects: The economic case for making rehabilitative programs standard of care

Purpose: The purpose of this work was to evaluate the patient-borne financial cost of common, adverse breast cancer treatment-associated effects, comparing cost across women with or without these side-effects. Methods: 287 Australian women diagnosed with early-stage breast cancer were prospectively followed starting at six months post-surgery for 12 months, with three-monthly assessment of detailed treatment-related side effects and their direct and indirect patient costs attributable to breast cancer. Bootstrapping statistics were used to analyze cost data and adjusted logistic regression was used to evaluate the association between costs and adverse events from breast cancer. Costs were inflated and converted from 2002 Australian to 2014 US dollars. Results: More than 90% of women experienced at least one adverse effect (i.e. post-surgical issue, reaction to radiotherapy, upper-body symptoms or reduced function, lymphedema, fatigue or weight gain). On average, women paid $5,636 (95%CI: $4,694, $6,577) in total costs. Women with any one of the following symptoms (fatigue, reduced upper-body function, upper-body symptoms) or women who report ≥4 adverse treatment-related effects, have 1.5 to nearly 4 times the odds of having higher healthcare costs than women who do not report these complaints (p<0.05). Conclusions: Women face substantial economic burden due to a range of treatment-related health problems, which may persist beyond the treatment period. Improving breast cancer care by incorporating prospective surveillance of treatment-related side effects, and strategies for prevention and treatment of concerns (e.g., exercise) has real potential for reducing patient-borne costs.

Models of survivorship care provision in adult patients with haematological cancer : an integrative literature review

Purpose: Increasing numbers of haematology cancer survivors warrants identification of the most effective model of survivorship care to survivors from a diverse range of haematological cancers with aggressive treatment regimens. This review aimed to identify models of survivorship care to support the needs of haematology cancer survivors. Methods: An integrative literature review method utilised a search of electronic databases (CINAHL, Medline, PsycInfo, PubMed, EMBASE, PsycArticles, Cochrane Library) for eligible articles (up to July 2014). Articles were included if they proposed or reported the use of a model of care for haematology cancer survivors. Results: Fourteen articles were included in this review. Eight articles proposed and described models of care and six reported the use of a range of survivorship models of care in haematology cancer survivors. No randomised controlled trials or literature reviews were found to have been undertaken specifically with this cohort of cancer survivors. There was variation in the models described and who provided the survivorship care. Conclusion: Due to the lack of studies evaluating the effectiveness of models of care, it is difficult to determine the best model of care for haematology cancer survivors. Many different models of care are being put into practice before robust research is conducted. Therefore well-designed high quality pragmatic randomised controlled trials are required to inform clinical practice.

The positioning of palliative care in acute care: A multiperspective qualitative study in the context of metastatic melanoma

Objective: The positioning and meaning of palliative care within the healthcare system lacks clarity which adds a level of complexity to the process of transition to palliative care. This study explores the transition to the palliative care process in the acute care context of metastatic melanoma. Method: A theoretical framework drawing on interpretive and critical traditions informs this research. The pragmatism of symbolic interactionism and the critical theory of Habermas brought a broad orientation to the research. Integration of the theoretical framework and grounded-theory methods facilitated data generation and analysis of 29 interviews with patients, family carers, and healthcare professionals. Results: The key analytical findings depict a scope of palliative care that was uncertain for users of the system and for those working within the system. Becoming “palliative” is not a defined event; nor is there unanimity around referral to a palliative care service. As such, ambiguity and tension contribute to the difficulties involved in negotiating the transition to palliative care. Significance of Results: Our findings point to uncertainty around the scopes of practice in the transition to palliative care. The challenge in the transition process lies in achieving greater coherency of care within an increasingly specialized healthcare system. The findings may not only inform those within a metastatic melanoma context but may contribute more broadly to palliative practices within the acute care setting.

Competency Standards and Educational Requirements for Specialist Breast Nurses in Australia

There is substantial evidence that Specialist Breast Nurses (SBNs) make an important contribution to improved outcomes for women with breast cancer, by providing information and support and promoting continuity of care. However, a recent study has identified significant variation in how the role functions across individual nurses and settings, which is likely to contribute to varied outcomes for women with breast cancer. The project reported in this paper illustrates how a set of competency standards for SBNs were developed by the National Breast Cancer Centre. The competency standards were developed through a review of published literature and consultation with key stakeholders. The resulting SBN Competency Standards reflect the core domains and elements of SBN practice seen as integral to achieving optimal outcomes for women with breast cancer. This project identifies the SBN as a registered nurse who applies advanced knowledge of the health needs, preferences and circumstances of women with breast cancer to optimise the individual's health and well-being at various phases across the continuum of care, including diagnosis, treatment, rehabilitation, follow-up and palliative care. The five core domains of practice identified are: Supportive care; Collaborative care; Coordinated care; Information provision and education; and Clinical leadership. A variety of education programs are currently available for nurses who wish to learn about breast cancer nursing. The majority of stakeholders consulted in this project agreed that a Graduate Diploma level of education is required at minimum in order for an SBN to develop the minimum level of competence required to perform the role. The evidence supports the view that as an advanced role, nurses practising as SBNs require high-quality programs of sufficient depth and scope to achieve the required level of competence

Development of a Resource for Parents with Advanced Cancer: What do Parents Want?

OBJECTIVE: Parents coping with a diagnosis of advanced cancer experience distress and guilt about the impact of the disease on their children but report that there are few resources specific to advanced disease to guide and support them in discussions with their children. Although some resources have been developed to assist parents with advanced cancer, it appears that these are not widely disseminated. METHODS: To determine the need for a brief resource that could be given to parents at the point of diagnosis of advanced cancer, including its content, in-depth interviews were conducted with eight women with advanced breast cancer. RESULTS: Women confirmed that they had received minimal assistance from health professionals in discussing the diagnosis with their children, and even when professional counselors were accessed they were not always attuned to the specific needs of parents with advanced cancer. Women felt frustrated that information they did access focused on early disease and lacked the details women felt they needed in coping with advanced cancer. Women felt that there was a need for a brief resource that reassured parents about the impact of the cancer on their children, including practical strategies to help them cope and examples of the ways other parents had responded to difficult questions such as about parental death. A draft resource was developed, critically reviewed by the participants, and their comments incorporated into a final version. SIGNIFICANCE OF RESULTS: This article expands on the themes highlighted by women as important to assist parents with advanced cancer, including the final resource that was developed.

Diagnostic and treatment pathways for men with prostate cancer in Queensland : investigating spatial and demographic inequalities

Background: Patterns of diagnosis and management for men diagnosed with prostate cancer in Queensland, Australia, have not yet been systematically documented and so assumptions of equity are untested. This longitudinal study investigates the association between prostate cancer diagnostic and treatment outcomes and key area-level characteristics and individual-level demographic, clinical and psychosocial factors.---------- Methods/Design: A total of 1064 men diagnosed with prostate cancer between February 2005 and July 2007 were recruited through hospital-based urology outpatient clinics and private practices in the centres of Brisbane, Townsville and Mackay (82% of those referred). Additional clinical and diagnostic information for all 6609 men diagnosed with prostate cancer in Queensland during the study period was obtained via the population-based Queensland Cancer Registry. Respondent data are collected using telephone and self-administered questionnaires at pre-treatment and at 2 months, 6 months, 12 months, 24 months, 36 months, 48 months and 60 months post-treatment. Assessments include demographics, medical history, patterns of care, disease and treatment characteristics together with outcomes associated with prostate cancer, as well as information about quality of life and psychological adjustment. Complementary detailed treatment information is abstracted from participants’ medical records held in hospitals and private treatment facilities and collated with health service utilisation data obtained from Medicare Australia. Information about the characteristics of geographical areas is being obtained from data custodians such as the Australian Bureau of Statistics. Geo-coding and spatial technology will be used to calculate road travel distances from patients’ residences to treatment centres. Analyses will be conducted using standard statistical methods along with multilevel regression models including individual and area-level components.---------- Conclusions: Information about the diagnostic and treatment patterns of men diagnosed with prostate cancer is crucial for rational planning and development of health delivery and supportive care services to ensure equitable access to health services, regardless of geographical location and individual characteristics. This study is a secondary outcome of the randomised controlled trial registered with the Australian New Zealand Clinical Trials Registry (ACTRN12607000233426)

Factors influencing quality of life in patients with benign primary brain tumors : prior to and following surgery

Goals: Few studies have repeatedly evaluated quality of life and potentially relevant factors in patients with benign primary brain tumor. The purpose of this study was to explore the relationship between the experience of the symptom distress, functional status, depression, and quality of life prior to surgery (T1) and 1 month post-discharge (T2). ---------- Patients and methods: This was a prospective cohort study including 58 patients with benign primary brain tumor in one teaching hospital in the Taipei area of Taiwan. The research instruments included the M.D. Anderson Symptom Inventory, the Functional Independence Measure scale, the Hospital Depression Scale, and the Functional Assessment of Cancer Therapy-Brain.---------- Results: Symptom distress (T1: r=−0.90, p<0.01; T2: r=−0.52, p<0.01), functional status (T1: r=0.56, p<0.01), and depression (T1: r=−0.71, p<0.01) demonstrated a significant relationship with patients' quality of life. Multivariate analysis identified symptom distress (explained 80.2%, Rinc 2=0.802, p=0.001) and depression (explained 5.2%, Rinc 2=0.052, p<0.001) continued to have a significant independent influence on quality of life prior to surgery (T1) after controlling for key demographic and medical variables. Furthermore, only symptom distress (explained 27.1%, Rinc 2=0.271, p=0.001) continued to have a significant independent influence on quality of life at 1 month after discharge (T2).---------- Conclusions: The study highlights the potential importance of a patient's symptom distress on quality of life prior to and following surgery. Health professionals should inquire about symptom distress over time. Specific interventions for symptoms may improve the symptom impact on quality of life. Additional studies should evaluate symptom distress on longer-term quality of life of patients with benign brain tumor.

Rumination, post-traumatic growth, and distress : structural equation modelling with cancer survivors

Objective Theoretical models of post-traumatic growth (PTG) have been derived in the general trauma literature to describe the post-trauma experience that facilitates the perception of positive life changes. To develop a statistical model identifying factors that are associated with PTG, structural equation modelling (SEM) was used in the current study to assess the relationships between perception of diagnosis severity, rumination, social support, distress, and PTG. Method A statistical model of PTG was tested in a sample of participants diagnosed with a variety of cancers (N=313). Results An initial principal components analysis of the measure used to assess rumination revealed three components: intrusive rumination, deliberate rumination of benefits, and life purpose rumination. SEM results indicated that the model fit the data well and that 30% of the variance in PTG was explained by the variables. Trauma severity was directly related to distress, but not to PTG. Deliberately ruminating on benefits and social support were directly related to PTG. Life purpose rumination and intrusive rumination were associated with distress. Conclusions The model showed that in addition to having unique correlating factors, distress was not related to PTG, thereby providing support for the notion that these are discrete constructs in the post-diagnosis experience. The statistical model provides support that post-diagnosis experience is simultaneously shaped by positive and negative life changes and that one or the other outcome may be prevalent or may occur concurrently. As such, an implication for practice is the need for supportive care that is holistic in nature.