Transforming and Translating Quality of Care into Quality ... · Professor Jeff Dunn UICC World Congress: Tuesday, Nov 1st, 2016 . Cancer Council Queensland Menzies Health Institute

CEO of the Cancer Council Queensland

UICC Board Member

Transforming and Translating Quality of Care into Quality of Life:

The Importance of Cancer Survivorship

Community Based Services

Disclosure: Pfizer Panelist

Transforming and Translating

Quality of Care into Quality of Life: The Importance of Cancer Survivorship

Community Based Services

Professor Jeff Dunn UICC World Congress: Tuesday, Nov 1st, 2016 Cancer Council Queensland Menzies Health Institute QLD University of Southern QLD

Who is a cancer survivor?

• “The act of redefining the term was part of a transformation in how people with cancer talked about their experiences.” NCCS

• In cancer, a person is considered to be a survivor from the time of diagnosis until the end of life. NIH, CDC, NCCS

• “Long term survivors most often resume their usual lives and jobs

yet remain at risk for oncologic, medical, rehabilitative, and psychosocial needs and issues.” Surbone & Tralongo, 2016.

@Pink Ribbon Blues

Cancer doesn’t “touch you”. It’s more likely to give you whiplash while threatening

to kill you

Tweet 20/10/16

Categories of patients with and survivors of cancer

Surbone & Tralongo, Categorization of Cancer Survivors: Why we need it, JCO, July 25th, 2016.

Category Description Acute Patients/survivors at first diagnosis or relapse, who require acute intervention

Chronic Patients/survivors with cancer that slowly progresses or alternates between phases of remission and relapse, often accompanied by acceptable quality of life

Long term Patients/survivors in clinical remission for long periods of time or for their entire life, who remain at risk for distant relapse or second tumors and who potentially can experience late treatment-related medical and psychosocial sequelae

Cured Disease-free patients/survivors whose cancer-specific mortality and life expectancy years after years diagnosis equals that of sex- and age-matched members of the general population

Survivorship Issues: Quality of Life & Quality of Care

• Psychosocial well being

• Self image and identity

• Physical health

• Economic stress

• Quality of life

• Surveillance

Patterns over five years for distress in cancer patients

Dunn et al. (2013). Psycho-oncology, 22, 1759-1765. DOI: 10.1002/pon.3210

Survivorship

• Not a single straight line! • Not one moment, one week or one month. • Need for programs across the journey

Quality of Life and Quality of Care

• Are QoL issues over or under reported?

• Is QoL defined the same or different across sectors?

• Do QoL perspectives and priorities differ across sectors? How?

Professional help models

• Cancer Helpline: one off tele-based brief information and emotional support

• Cancer Nurse Counselling: Single in depth counselling, stress management and decision support.

• Counselling Services: Up to five sessions of psychological counselling

• Mindfulness Group Programs

Faller at al, JCO, xxx

Shared Experience

Peer support is based on the support partner or 'veteran‘ patient having personal experience and knowledge about the cancer experience; a unique personal insight into effective ways to cope; and the ability to form a support relationship that is derived from the connection of shared experience.

Embodied Health Movement

• organised movements that challenge science and medicine from all stages of the disease from the perspective of the illness experience

• the experience of people with the disease; challenge medical science or health services; collaborate with scientists and health care providers to pursue change

Social movement: The case of prostate cancer

• Early 1990s PSA test introduced in Australia: controversy follows

• 1995 prostate cancer incidence peaks • 1993 peer led prostate cancer support groups begin to

emerge in response across the country

Leading from the heart “We just followed our hearts, that’s what we did. We really felt that, you know, what we wanted to do was help people and that’s putting it very simplistic. John ran his meetings completely ad hoc, there was nothing formal about them and if he ran out of something to say, he – he was a part-time magician – and he’d do a couple of magic tricks… He was a very compassionate man and a wonderful sort of a person to lift people up. the point I’m making is he started off with no tools and he just sort of learnt as he was going.”

Control and autonomy

“.. loose reins, let's say in our particular instance, let the guys do their thing, tell me what they want, I'll assist them. If I see that they're going off the rails a little bit, I'll sort of steer them back in. Tight reins mean that you run it as you see it. .. Our main form of support was before and after the meeting and it was very, very informal. That didn't happen under a tight rein system.”

Peer Support

The Helper-Therapy principle: • Giving help to others can result in a positive upward spiral for

the Helper • Helpees become helpers and help giving resources are

expanded • Social Capital builds Peer support reduces social isolation, promotes hope and optimism about the future, enhances coping.

Current Survivorship Research Program

• RCT of a web based self help cognitive behavioural intervention

• Lung Cancer and Stigma

• Supportive care for Advanced Melanoma

• Geographic Differentials in Cancer Outcomes

• Exercise medicine and peer support

• Prostate cancer survivorship: psychosocial and psychosexual help models

ISBN: 978-0-9945028-4-1

Questions and Food for Thought?

Rise and Shine and Join Us for Breakfast!! The Promise and Challenges of Immuno-oncology for the

Cancer Community

Join us to discuss ways to close the gaps in providing quality cancer treatment and diagnosis for all

2 November, 7:50-8:50. Doors Open at 7:30am Hôtel Le Méridien Etoile

Organized by Oncology

Merci!! Thank you for joining us!