Intent of the optimal care pathways

This optimal cancer care pathway is intended to guide the delivery of consistent, safe, high-quality and evidence-based care for people with sarcoma.

The pathway aligns with key service improvement priorities, including providing access to coordinated multidisciplinary care and supportive care and reducing unwanted variation in practice.

The optimal cancer care pathway can be used by health services and professionals as a tool to identify gaps in current cancer services and to inform quality improvement initiatives across all aspects of the care pathway. The pathway can also be used by clinicians as an information resource and tool to promote discussion and collaboration between health professionals and people affected by cancer.

The following key principles of care underpin the optimal cancer care pathway.

Patient-centred care

Patient- or consumer-centred care is healthcare that is respectful of, and responsive to, the preferences, needs and values of patients and consumers. Patient- or consumer-centred care is increasingly being recognised as a dimension of high-quality healthcare in its own right, and there is strong evidence that a patient-centred focus can lead to improvements in healthcare quality and outcomes by increasing safety and cost-effectiveness as well as patient, family and staff satisfaction (ACSQHC 2013).

Safe and quality care

This is provided by appropriately trained and credentialled clinicians, hospitals and clinics that have the equipment and staffing capacity to support safe and high-quality care. It incorporates collecting and evaluating treatment and outcome data to improve the patient experience of care as well as mechanisms for ongoing service evaluation and development to ensure practice remains current and informed by evidence. Services should routinely be collecting relevant minimum datasets to support benchmarking, quality care and service improvement.

Multidisciplinary care

This is an integrated team approach to healthcare in which medical and allied health professionals consider all relevant treatment options and collaboratively develop an individual treatment and care plan for each patient. There is increasing evidence that multidisciplinary care improves patient outcomes.

The benefits of adopting a multidisciplinary approach include:

  • improving patient care through developing an agreed treatment plan
  • providing best practice through adopting evidence-based guidelines
  • improving patient satisfaction with treatment
  • improving the mental wellbeing of patients
  • improving access to possible clinical trials of new therapies
  • increasing the timeliness of appropriate consultations and surgery and a shorter timeframe from diagnosis to treatment
  • increasing the access to timely supportive and palliative care
  • streamlining pathways
  • reducing duplication of services (Department of Health 2007b).

Supportive care

Supportive care is an umbrella term used to refer to services, both generalist and specialist, that may be required by those affected by cancer. Supportive care addresses a wide range of needs across the continuum of care and is increasingly seen as a core component of evidence-based clinical care. Palliative care can be part of supportive care processes. Supportive care in cancer refers to the following five domains:

  • physical needs
  • psychological needs
  • social needs
  • information needs
  • spiritual needs.

All members of the multidisciplinary team have a role in providing supportive care. In addition, support from family, friends, support groups, volunteers and other community-based organisations make an important contribution to supportive care.

An important step in providing supportive care is to identify, by routine and systematic screening (using a validated screening tool) of the patient and family, views on issues they require help with for optimal health and quality-of-life outcomes. This should occur at key points along the care pathway, particularly at times of increased vulnerability including:

  • initial presentation or diagnosis (the first three months)
  • the beginning of treatment or a new phase of treatment
  • change in treatment
  • change in prognosis
  • end of treatment
  • survivorship
  • recurrence
  • change in or development of new symptoms
  • palliative care
  • end-of-life care.

Following each assessment, potential interventions need to be discussed with the patient and carer and a mutually agreed approach to multidisciplinary care and supportive care formulated (NICE 2004).

Common indicators in patients with sarcoma that may require referral for support include:

  • pain
  • fatigue
  • mobility issues such as limb weakness
  • difficulty sleeping
  • distress, depression or fear
  • poor performance status
  • living alone or in remote areas, or being socially isolated
  • having caring responsibilities for others
  • cumulative stressful life events
  • existing mental health issues
  • financial stress
  • work- or study-related stress
  • Aboriginal or Torres Strait Islander status
  • being from a culturally and linguistically diverse background.

Depending on the needs of the patient, referral to an appropriate health professional(s) and/or organisation(s) should be considered including:

  • an adolescent and young adult (AYA) representative
  • community-based support services (such as Cancer Council Australia)
  • a dietitian
  • an exercise physiologist
  • a genetic counsellor
  • a fertility expert
  • a nurse practitioner and/or specialist nurse
  • an occupational therapist
  • peer support groups (contact the Cancer Council on 13 11 20 for more information)
  • a physiotherapist
  • a psychologist or psychiatrist
  • a social worker
  • specialist palliative care
  • a speech therapist.

See the Appendix for more information on supportive care and the specific needs of people with sarcoma.

Care coordination

Care coordination is a comprehensive approach to achieving continuity of care for patients. This approach seeks to ensure that care is delivered in a logical, connected and timely manner so the medical and personal needs of the patient are met.

In the context of cancer, care coordination encompasses multiple aspects of care delivery including multidisciplinary team meetings, supportive care screening/assessment, referral practices, data collection, developing common protocols, providing information and individual clinical treatment.

Improving care coordination is the responsibility of all health professionals involved in patient care and should therefore be considered in their practice. Enhancing continuity of care across the health sector requires a whole-of-system response – that is, that initiatives to address continuity of care occur at the health system, service, team and individual levels (Department of Health 2007c).

Communication

The healthcare system and all people within its employ are responsible for ensuring the communication needs of patients, their families and carers are met. Every person with cancer will have different communication needs, including cultural and language differences. Communication with patients should be:

  • timely
  • individualised
  • truthful and transparent
  • consistent
  • in plain language (avoiding complex medical terms and jargon)
  • culturally appropriate
  • active, interactive and proactive
  • ongoing
  • delivered in an appropriate setting and context
  • inclusive of patients and their families (with the patient’s consent).

In communicating with patients, healthcare providers should:

  • listen to patients and act on the information provided by them
  • encourage expression of individual concerns, needs and emotional states
  • tailor information to meet the needs of the patient, their carer and family
  • use professionally trained interpreters when communicating with people from culturally and linguistically diverse backgrounds
  • ensure the patient and/or their carer and family have the opportunity to ask questions
  • ensure the patient is not the conduit of information between areas of care (it is the provider’s and healthcare system’s responsibility to transfer information between areas of care)
  • take responsibility for communication with the patient
  • respond to questions in a way the patient understands
  • enable all communication to be two-way.

Healthcare providers should also consider offering the patient a Question Prompt List (QPL) before their consultation, plus recordings or written summaries of their consultations. QPLs are effective in improving the communication, psychological and cognitive outcomes of cancer patients (Brandes et al. 2014). Providing recordings or summaries of key consultations may improve the patient’s recall of information and patient satisfaction (Pitkethly et al. 2008).

Research and clinical trials

Where practical, patients should be offered the opportunity to participate in research and/or clinical trials at any stage of the care pathway. Research and clinical trials play an important role in establishing efficacy and safety for a range of treatment interventions, as well as establishing the role of psychological, supportive and palliative care interventions (Sjoquist & Zalcberg 2013).

While individual patients may or may not receive a personal benefit from the intervention, there is evidence that outcomes for participants in research and clinical trials are generally improved, perhaps due to the rigour of the process required by the trial. Leading cancer agencies often recommend participating in research and clinical trials as an important part of patient care. Even in the absence of measurable benefits to patients, participating in research and clinical trials will contribute to the care of cancer patients in the future (Peppercorn et al. 2004).