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Overview: Improving outcomes for cancer survivors in Australia

Michael Jefford

Issues for cancer survivors in Australia

Allison Boyes, Katharine Hodgkinson, Lynley Aldridge and Jane Turner

As the number of people surviving cancer continues to increase, the need to know about the issues they face and how to support them becomes more urgent. Cancer is a life-changing diagnosis, with many survivors experiencing a range of both positive and negative outcomes attributed to cancer. While most survivors adjust well over time and experience relatively high quality of life, issues persist for some. Many survivors experience ongoing physical effects such as fatigue, pain and sexual problems. Some experience elevated levels of anxiety, depression or mood impairment and ongoing disruptions to daily living and social activities. New issues that emerge can include employment problems, insurance difficulties and worries about health, including cancer recurrence. Positive effects include changed values and goals, enhanced appreciation of life, improved close relationship with others, altruism and lifestyle changes. This article provides a brief overview of the psychological, physical, social and existential impact of cancer, with an emphasis on the issues faced by survivors after the completion of primary treatment.

Caregivers of cancer survivors: the state of the field

Afaf Girgis and Sylvie Lambert

Increasingly, researchers and clinicians are recognising the reverberating impact of a cancer diagnosis on patients’ families. Upon diagnosis, families often find themselves grappling with intense emotions and existential concerns at the same time as they are providing support to patients, taking on novel care giving roles and responsibilities and attempting to remain afloat with other competing life events. In the midst of this whirlwind, patients and their caregivers may be struggling to find optimal coping strategies and adjust to potential disruptions in routines and activities. Despite efforts to manage care giving demands, these may inadvertently exceed caregivers’ capabilities and result in them feeling burdened and exhausted. This paper reviews current evidence on the impact of a cancer diagnosis on families/caregivers, with a particular focus on the survivorship stage as well as Australian research initiatives. In addition, intervention research designed to assist families/caregivers with the demands of their roles will be reviewed. Last, limitations hampering caregiver research and priorities for future research will be discussed.

What constitutes ideal survivorship care?

Kerryann Lotfi-Jam, Penelope Schofield and Michael Jefford

There is increasing recognition that cancer survivors require continued care, beyond diagnosis and treatment. They are at increased risk of second and recurrent cancers, treatment related side-effects, other co-morbid health conditions, as well as psychological and social difficulties. However, current care is suboptimal and does not adequately meet the needs of this vulnerable population. In this paper, the principles of optimal survivorship care are discussed, including: prevention and detection of new cancers and recurrent cancer; surveillance for cancer spread, recurrence or second cancers; interventions for consequences of cancer and its treatment and; coordination between specialists and primary care providers. Barriers to achieving optimal care are discussed and recommendations made for improving survivorship care.

Nurse-led survivorship care

Priscilla Gates and Meinir Krishnasamy

The goal of post treatment survivorship care is primarily to promote the health of an individual. This goal has clear resonance with theories and practice of nursing, where the essence of specialised nursing knowledge is directed towards helping individuals regain health, at a time when they are unable to, or lack an appreciation of the importance of doing so. With impressive improvements in survival rates, survivors of Hodgkin’s Lymphoma constitute a large cohort of survivors who are at risk of developing long-term and late effects related to treatment. Late effects include secondary malignancies, cardiac dysfunction, endocrine dysfunction, infertility, functional decline and psychosocial morbidity. Many late effects are avoidable or amenable to amelioration by early detection or risk modification.This paper describes the development of an innovative model of nurse-led care, delivered within the context of a multi-disciplinary, haematology, late effects clinic.

General practitioner-based models of post-treatment follow up

Meagan Brennan and Michael Jefford

In Australia, most survivorship care is currently provided by specialist oncologists. However, the increasing numbers of cancer survivors, together with workforce issues in oncology, make the development of alternative models of care essential. Following completion of cancer treatments many survivors have significant unmet needs. As providers of comprehensive, long-term care with an intimate knowledge of the patient’s health and social context, general practitioners are ideally placed to provide survivorship care. Several models involving general practitioner care have been evaluated and other potential models are yet to be fully developed and assessed. These include exclusive general practitioner care following discharge from specialist care, general practitioner led interventions and shared care programs, generally supported by the use of survivorship care plans. These will be explored and benefits and potential challenges will be discussed.

Health behaviour interventions for cancer survivors: An overview of the evidence and contemporary Australian trials

Annabel Pollard, Elizabeth Eakin, Janette Vardy and Anna Hawkes

Cancer survivors experience significant ongoing health problems, primarily as a result of cancer treatment, pre-morbid health status and lifestyle. While significant public health resources have been directed at cancer prevention via reducing health risk behaviours such as smoking, physical inactivity and excessive alcohol consumption, considerably less attention has been directed at promoting health enhancing behaviours in cancer survivors. Emerging research suggests that such a focus can significantly improve health outcomes for cancer survivors. This article reviews the evidence in more detail and highlights contemporary Australian research in the field.

Challenges facing survivors of childhood and adolescent cancer

Greg Wheeler, Kate Thompson, Josephine Samers and John Seymour

The last 40 years have seen major changes in the treatment of childhood and adolescent cancers. From a nearly uniform fatal outcome to an expectant 80% probability of cure, the number of long-term survivors has dramatically increased. During the last 20 years the significant consequences of surgery, radiotherapy and chemotherapy have become apparent. Permanent complications as a result of the tumour itself and initial surgery are aggravated by long-term effects of radiotherapy and chemotherapy. The assumption that cancer cure leads to the end of medical surveillance is being overturned as more research regarding long-term and late effects is reported. The effect on psychosocial development of children and adolescents is increasingly being recognised and this has implications well into adulthood. With the increasing number of survivors of childhood and adolescent malignancies in the community, medical and allied health professions should develop a knowledge of the implications of having had these diagnoses and their subsequent treatments. The challenges in creating a robust, sustainable model of ongoing care for these patients is significant, with options ranging from discharge to family doctors, who are provided with information, through to totally tertiary referral centre based care.

Cancer survivorship: research priorities at the national and international levels

Afaf Girgis and Phyllis Butow

With an increasing number of people living with and beyond a cancer diagnosis, research addressing the needs of this population has consistently been identified as one of the key priorities for a global survivorship agenda. Within an international context, US, UK and Canada have been key players in priority setting activities, with the consistency across these nations lending support for a global survivorship research agenda. Priorities identified include: development of tools and instruments for use in survivorship research; development of effective care models and interventions; investigation of long-term effects of cancer diagnosis and treatment on patients, their families and caregivers; and needs and characteristics of unique or disadvantaged populations. An overview of the research being undertaken in Australia suggests a high level of congruency with international priorities, with a wide spectrum of research addressing issues across the whole survivorship continuum. However, support is needed for further work to progress our understanding of survivorship issues within an Australian context, particularly in the areas of unique populations, lifestyle factors and effective care models.

Measuring the unmet needs of those with cancer: a critical overview

Rob Sanson-Fisher, Mariko L Carey and Christine L Paul

Unmet needs scales are a way of eliciting cancer patients’ perceptions of their need for help in order to achieve optimal psychosocial wellbeing. This represents a bottom-up approach to the assessment of psychosocial wellbeing. It may be used in conjunction with traditional top-down, expert driven methods of conceptualising psychosocial status. While there has been an expansion in the development of unmet needs scales for cancer patients, survivors and significant others, there remains a need to ensure that these measures are psychometrically robust. Predictive validity, in particular, has been largely unexamined. More work is needed to establish the clinical utility of unmet need scales and how to define what represents meaningful changes on these measures.

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