Provision of survivorship care for patients with haematological malignancy at completion of treatment: a cancer nursing practice survey study

Purpose Many haematological cancer survivors report long-term physiological and psychosocial effects, which persist far beyond treatment completion. Cancer services have been required to extend care to the post-treatment phase to implement survivorship care strategies into routine practice. As key members of the multidisciplinary team, cancer nurses’ perspectives are essential to inform future developments in survivorship care provision. Methods This is a pilot survey study, involving 119 nurses caring for patients with haematological malignancy in an Australian tertiary cancer care centre. The participants completed an investigator developed survey designed to assess cancer care nurses’ perspectives on their attitudes, confidence levels, and practice in relation to post-treatment survivorship care for patients with a haematological malignancy. Results Overall, the majority of participants agreed that all of the survivorship interventions included in the survey should be within the scope of the nursing role. Nurses reported being least confident in discussing fertility and employment/financial issues with patients and conducting psychosocial distress screening. The interventions performed least often included, discussing fertility, intimacy and sexuality issues and communicating survivorship care with the patient’s primary health care providers. Nurses identified lack of time, limited educational resources, lack of dedicated end-of-treatment consultation and insufficient skills/knowledge as the key barriers to survivorship care provision. Conclusion Cancer centres should implement an appropriate model of survivorship care and provide improved training and educational resources for nurses to enable them to deliver quality survivorship care and meet the needs of haematological cancer survivors.

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.

What are the barriers of quality survivorship care for haematology cancer patients? Qualitative insights from cancer nurses

Purpose: Many haematological cancer survivors report long-term physiological and psychosocial effects beyond treatment completion. These survivors continue to experience impaired quality of life (QoL) as a result of their disease and aggressive treatment. As key members of the multidisciplinary team, the purpose of this study is to examine the insights of cancer nurses to inform future developments in survivorship care provision. Methods: Open text qualitative responses from two prospective Australian cross-sectional surveys of nurses (n=136) caring for patients with haematological cancer. Data were analysed thematically, using an inductive approach to identify themes. Results: This study has identified a number of issues that nurses perceive as barriers to quality survivorship care provision. Two main themes were identified; the first relating to the challenges nurses face in providing care (‘care challenges’), and the second relating to the challenges of providing survivorship care within contemporary health care systems (‘system challenges’). Conclusions: Cancer nurses perceive the nature of haematological cancer and its treatment, and of the health care system itself, as barriers to the provision of quality survivorship care. Care challenges such as the lack of a standard treatment path and the relapsing or remitting nature of haematological cancers may be somewhat intractable, but system challenges relating to clearly defining and delineating professional responsibilities and exchanging information with other clinicians are not. Implications for Cancer Survivors: Addressing the issues identified will facilitate cancer nurses’ provision of survivorship care, and help address haematological survivors’ needs with regard to the physical and psychosocial consequences of their cancer and treatment.

Survivorship care provision for patients with hematologic malignancies: The quest for quality evidence

This is an editorial that depicts the importance for developing more quality evidence to guide the survivorship care provision for patients with hematologic malignancies. Treatments for hematologic malignancies are often complex and debilitating, with increased risk of immune suppression and infections1. Some patients receive allogeneic stem cell transplantation that often requires in-patient stay of several weeks and life-long medical follow up. In recent years, advances in treatment regimens, and an aging population saw an increasing number of patients living with a hematologic malignancies or surviving curative therapy.2 The increased use of targeted therapies in hematologic malignancies (e.g. rituximab for non-Hodgkin lymphoma, bortezomib in multiple myeloma and imatinib in Chronic Myelogenous Leukemia has also resulted in improved overall survival...

Interest from Tertiary Educated Persons in Fostering Children with Higher Care needs under a Professional (Paid) Model Compared with General Foster Care

The number of Australian children requiring foster care due to abuse and neglect is increasing at a faster rate than suitable carers can be recruited. Currently increased numbers of foster children are presenting with higher care needs. Evidence suggests carers with a higher education could contribute to placement stability and ultimately provide more positive outcomes for this group of children. This paper explores the level of interest by tertiary educated persons toward a model of fostering for children with higher needs. Using a descriptive survey methodology, a convenience sample of 644 university undergraduate and postgraduate students within faculties of health sciences, and education, arts and social sciences was employed. Psychology students in the 17-26 year old age group showed greatest interest in a professional foster care model and this was statistically significant (p=0.002 955 CI .000-.010) when compared to other health professionals and other age groups. Education students held the highest interest in general fostering although not statistically significant. When these survey results were extrapolated to the total number of health professionals in Australia there could be 8,385 potential recruits for a model professional foster care. Focused campaigns are required to source professional as recruits to fostering with the benefit of servicing the placement needs of higher care needs children and contributing to general foster care resources.

‘Working with the team’ : an exploratory study of improved type 2 diabetes management in a new model of integrated primary/secondary care

This study aimed to explore how a new model of integrated primary/secondary care for type 2 diabetes management, the Brisbane South Complex Diabetes Service (BSCDS), related to improved diabetes management in a selected group of patients. We used a qualitative research design to obtain detailed accounts from the BSCDS via semi-structured interviews with 10 patients. The interviews were fully transcribed and systematically coded using a form of thematic analysis. Participants’ responses were grouped in relation to: (1) Patient-centred care; (2) Effective multiprofessional teamwork; and (3) Empowering patients. The key features of this integrated primary/secondary care model were accessibility and its delivery within a positive health care environment, clear and supportive interpersonal communication between patients and health care providers, and patients seeing themselves as being part of the team-based care. The BSCDS delivered patient-centred care and achieved patient engagement in ways that may have contributed to improved type 2 diabetes management in these participants.

The ENHANCES study--Enhancing Head and Neck Cancer patients' Experiences of Survivorship: study protocol for a randomized controlled trial

Background Few cancers pose greater challenges than head and neck (H&N) cancer. Residual effects following treatment include body image changes, pain, fatigue and difficulties with appetite, swallowing and speech. Depression is a common comorbidity. There is limited evidence about ways to assist patients to achieve optimal adjustment after completion of treatment. In this study, we aim to examine the effectiveness and feasibility of a model of survivorship care to improve the quality of life of patients who have completed treatment for H&N cancer. Methods This is a preliminary study in which 120 patients will be recruited. A prospective randomised controlled trial of the H&N Cancer Survivor Self-management Care Plan (HNCP) involving pre- and post-intervention assessments will be used. Consecutive patients who have completed a defined treatment protocol for H&N cancer will be recruited from two large cancer services and randomly allocated to one of three study arms: (1) usual care, (2) information in the form of a written resource or (3) the HNCP delivered by an oncology nurse who has participated in manual-based training and skill development in patient self-management support. The trained nurses will meet patients in a face-to-face interview lasting up to 60 minutes to develop an individualised HNCP, based on principles of chronic disease self-management. Participants will be assessed at baseline, 3 and 6 months. The primary outcome measure is quality of life. The secondary outcome measures include mood, self-efficacy and health-care utilisation. The feasibility of implementing this intervention in routine clinical care will be assessed through semistructured interviews with participating nurses, managers and administrators. Interviews with patients who received the HNCP will explore their perceptions of the HNCP, including factors that assisted them in achieving behavioural change. Discussion In this study, we aim to improve the quality of life of a patient population with unique needs by means of a tailored self-management care plan developed upon completion of treatment. Delivery of the intervention by trained oncology nurses is likely to be acceptable to patients and, if successful, will be a model of care that can be implemented for diverse patient populations.

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.

'Being-in-the-world-of-care' : the lived experiences of older people receiving community aged care packages in Queensland

It has been recognised in current literature that, in general, Australia’s population is ageing and that older people are increasingly choosing to continue to live in the community in their own homes for as long as possible. Such factors of social change are expected to lead to larger numbers of older people requiring community care services for longer periods. Despite this, there is little information available in the literature on the perceptions and experiences of older people regarding community-based care and support. This study explores the lived experience of a small group of older people living in South East Queensland who were receiving a level of care consistent with the Community Aged Care Package (CACP). It also sought to examine the impact and meaning of that care on the older person’s overall lifestyle, autonomy, and personal satisfaction. In-depth interviews were undertaken with these older people, and were analysed using Heidegger’s interpretive hermeneutical phenomenological approach. Shared narratives were then explored using Ricoeur’s narrative analysis framework. In order to sensitise the researcher to the unconscious or symbolic aspects of the care experience, Wolfensberger’s social role valorization theory (SRV) was also utilised during a third phase of analysis. Methodological rigour was strengthened within this study through the use of reflexivity and an in-depth member check discussion that was conducted with each participant. The interviews revealed there were significant differences in expectations, understanding, and perceptions between older people and their carers or service providers. The older person perceived care primarily in relational terms, and clearly preferred active participation in their care and a consistent relationship with a primary carer. Older people also sought to maintain their sense of autonomy, lifestyle, home environment, routines, and relationships, as closely as possible to those that existed prior to their requiring assistance. However, these expectations were not always supported by the care model. On the whole, service providers did not always understand what older people perceived was important within the care context. Carers seldom looked beyond the provision of assistance with specific daily tasks to consider the real impact of care on the older person. The study identified that older people reported a range of experiences when receiving care in their own homes. While some developed healthy and supportive connections with their carers, others experienced ageism, abuse, and exploitation. Unsatisfactory interactions at times resulted in a loss, to varying degrees, of their independence, their possessions, and their connectedness with others. There is therefore a need for service providers to pay more attention to the perceptions and self-perceived needs of older people, to avoid unintended or unnecessary negative impacts occurring within care provision. The study provides valuable information regarding the older person’s experience that will assist in supporting the further development and improvement of this model of care. It is proposed that these insights will enable CACPs to cater more closely to the actual needs and preferences of older people, and to avoid causing preventable harm to care recipients.

The concept of congruent patient-centred care for hepatitis C management

Patient-centred care has been touted as the cornerstone of an effective and efficient primary health care system. However, primary care by its nature is a fragmented system. The system co-evolves in response to needs rather than being planned. In recent years, Medicare Locals were formed in Australia with the intention to tap into this pragmatic nature of primary care and foster health services delivery which is responsive to community and individual patient needs i.e. ‘patient-centred care’. However, it remains to be seen what and how theoretical framework/s can inform this work. For this presentation we aim to illustrate with a case study how hepatitis C is currently managed in primary care and hypothesise what a congruent model of patient-centred care for hepatitis C management could look like.

Integrated chronic disease management in primary-secondary care : a systematic literature review of the evidence

Introduction: Diabetes has traditionally been managed as a single chronic disease state, but it exists with co-morbidities such as depression and metabolic syndrome. Treatment is multifaceted, requiring both primary and secondary care, however, the delivery of diabetes care is often fragmented. Integrated chronic disease management is a growing model of interest, and is underpinned by the chronic care model (CCM), devised as a guide for primary care management of patients with chronic conditions. The model identifies six key elements for effective care, and has shown promise in improving the management of diabetes. Aim: To find empirical evidence of integrated care interventions targeted at co-morbidities including diabetes, across primary/secondary care. Method: A systematic review of peer reviewed literature from PubMed, CINAHL, Embase, Cochrane Library and Joanna Briggs was performed. Studies were reviewed according to inclusion criteria- studies published in English, between 2004-2014, empirical studies, studies with evidence of primary/secondary implementation, and those dealing with chronic co-morbid disease states. Results: 51 studies met the inclusion criteria. Included studies were mostly from the US (38), with five from Australia, UK (2), Canada (2), Netherlands (1), Norway (1), Ireland (1), and one multi-country study. It was found that all interventions adopted at least one (average 3-4) of the chronic care model, with the majority implementing delivery system redesign activities within the primary care practice/s. We found evidence of interventions which significantly reduced emergency department and hospital admissions, improved processes of care, patient health outcomes such as HbA1c, improved patient satisfaction, and reduced costs. Conclusion/Implications for practice: Diabetes exists as a co-morbid disease, requiring both primary and secondary care. We found that integrated care interventions adopting elements of the chronic care model positively impacted on patient outcomes, service utilisation, as well as costs. This review has highlighted that it may not be necessary to adopt all CCM elements to improve clinical outcomes, patient satisfaction and costs.

Challenges in improving chronic disease survivorship outcomes using tele-health and self-managed online solutions

The advances in modern information and communication (ICT) technology continue to address the challenges and improve` health outcomes for the survivors of chronic disease such as prostate cancer. The management of survivorship is increasingly becoming an important need for the survivors to manage their chronic conditions. The technology interventions such as tele-health as well as self-managed technology applications have shown a potential to improve survivorship outcomes. However, the application of these tools should be supported by strong health economics evidence. This work discusses the challenges of technology led survivorship care models and presents an integrated approach to address these challenges.

Developing and evaluating interventions that are applicable and relevant to inpatients and those who care for them; a multiphase, pragmatic action research approach

Background Randomised controlled trials may be of limited use to evaluate the multidisciplinary and multimodal interventions required to effectively treat complex patients in routine clinical practice; pragmatic action research approaches may provide a suitable alternative. Methods A multiphase, pragmatic, action research based approach was developed to identify and overcome barriers to nutritional care in patients admitted to a metropolitan hospital hip-fracture unit. Results Four sequential action research cycles built upon baseline data including 614 acute hip-fracture inpatients and 30 purposefully sampled clinicians. Reports from Phase I identified barriers to nutrition screening and assessment. Phase II reported post-fracture protein-energy intakes and intake barriers. Phase III built on earlier results; an explanatory mixed-methods study expanded and explored additional barriers and facilitators to nutritional care. Subsequent changes to routine clinical practice were developed and implemented by the treating team between Phase III and IV. These were implemented as a new multidisciplinary, multimodal nutritional model of care. A quasi-experimental controlled, ‘before-and-after’ study was then used to compare the new model of care with an individualised nutritional care model. Engagement of the multidisciplinary team in a multiphase, pragmatic action research intervention doubled energy and protein intakes, tripled return home discharge rates, and effected a 75% reduction in nutritional deterioration during admission in a reflective cohort of hip-fracture inpatients. Conclusions This approach allowed research to be conducted as part of routine clinical practice, captured a more representative patient cohort than previously reported studies, and facilitated exploration of barriers and engagement of the multidisciplinary healthcare workers to identify and implement practical solutions. This study demonstrates substantially different findings to those previously reported, and is the first to demonstrate that multidisciplinary, multimodal nutrition care reduces intake barriers, delivers a higher proportional increase in protein and energy intake compared with baseline than other published intervention studies, and improves patient outcomes when compared with individualised nutrition care. The findings are considered highly relevant to clinical practice and have high translation validity. The authors strongly encourage the development of similar study designs to investigate complex health problems in elderly, multi-morbid patient populations as a way to evaluate and change clinical practice.

Exercise and cancer survivorship

Exercise has been identified as an integral component of comprehensive survivorship care and a promising adjuvant therapy to aid in the management of cancer. Leading organisations worldwide now advocate exercise for cancer survivors. Here we briefly review the existing evidence for exercise and survivorship, as well as current research endeavours in Australia. Discussion extends to identify the gaps between research and practice, as well as future research directions needed to drive the field forward. With continued efforts by scientists, clinicians and consumers, there is real potential to strengthen the nexus between scientific evidence and clinical practice and integrate exercise into standard cancer care.

Towards universal high quality early childhood education

The Australian Government has committed $970 million over 5 years to fund the expansion of preschool education and has established a National Early Childhood Education Partnership Agreement with States and Territories to achieve universal preschool access by 2013. The Partnership Agreement acknowledges the role of State and Territory Government in preschool education, and different approaches to preschool provision. It also recognises differences in current preschool participation rates across states and territories. This paper offers snapshots of a number of different models of preschool provision, spanning traditional sessional approaches to some integrated and innovative approaches within the long day care context. The paper explores the newer long day care model and offers recommendations for the delivery of preschool education within this different context.