Survivorship and Living Well after Cancer Research

Located within Cancer Experiences Research, our Survivorship and Living Well after Cancer program focuses on research that aims to better understand the issues that survivors experience and their needs, and aims to develop and test interventions to improve survivors' wellbeing. Our research also seeks to develop sustainable models of healthcare delivery for cancer survivors.

Research focus

  • Better understand the experience and needs of cancer survivors
  • Better understand the experience and needs of caregivers
  • Develop resources to meet the information needs of survivors and caregivers
  • Understand patterns of care in the post-treatment phase
  • Understand and address disparities in patient outcomes and experiences
  • Understand barriers to referral to evidence-based interventions for survivors including to healthy lifestyle interventions
  • Determine the most effective ways to incorporate critical elements of survivorship care into clinical practice, including use of survivorship care plans, needs assessment and risk stratification
  • Understand barriers to implementation of models of post-treatment care
  • Explore novel models of post-treatment care

Program Lead

Professor Michael Jefford

Professor Michael Jefford is a medical oncologist and Director of the Australian Cancer Survivorship Centre, a Richard Pratt Legacy. Michael’s research focus is on understanding cancer survivors’ needs, experiences and patterns of care with the goal of developing effective and sustainable models of post-treatment survivorship care.

Email: [email protected]

Research Projects

CURRENT

SCORE: Shared care of colorectal cancer survivors: A randomised controlled trial (RCT) of hospital-based follow up versus shared hospital and general practice follow-up for survivors of colorectal cancer. The SCORE trial is a two-part RCT aiming to assess the effectiveness, cost-effectiveness and feasibility of shared primary and hospital-based care compared to usual care for this patient group. The protocol has been published and is available here. (Principal Investigator: Prof Michael Jefford)

Identifying statewide disparities and building research capacity in cancer survivorship: Commencing late 2019, this project will utilise several large data sets, including clinical registry data, linked administrative datasets and patient-reported outcome and experience data to better understand current patterns of follow-up care, and disparities in survivorship experience and outcomes. This project is a collaboration between Peter Mac, University of Melbourne, Monash University and Deakin University. (Principal Investigators: Prof Michael Jefford and Prof Maarten IJzerman)

Meeting the needs of cancer survivors through shared care: developing guidance for implementation: This project aims to produce practical advice for clinicians wanting to implement shared primary and specialist follow-up care for people living beyond cancer. This will be achieved by developing recommendations for implementation based on the results of 1) a systematic review and 2) a qualitative focus group study of health care professional experiences with shared care. (Principal Investigators: Prof Michael Jefford and Dr Karolina Lisy)

Understanding the survivorship experience of patients with metastatic non-small cell lung cancer (NSCLC) on long-term immunotherapy or targeted therapy: This qualitative study will utilise semi-structured patient interviews to characterise the physical, psychological, social and functional challenges and unmet needs experienced by patients with metastatic NSCLC receiving immunotherapy or targeted therapy. We are collaborating with researchers at RMIT University. (Principal Investigator: Prof Michael Jefford)

COMPLETED

The survivorship experience of patients with metastatic melanoma being treated with immune checkpoint and BRAF-MEK inhibitors. Refer to the study outcomes which have been published. (Principal Investigator: Prof Michael Jefford)

The return to work experience of survivors of human papilloma virus-associated oropharyngeal cancer. Refer to the published outcomes of the primary study. (Principal Investigator: Prof Michael Jefford)

What are the most commonly reported unmet needs of Australian cancer survivors? A systematic review. Refer to the completed review which has been published. (Principal Investigators: Prof Michael Jefford and Dr Karolina Lisy)

COLLABORATIONS

Development of an European Organisation for Research and Treatment of Cancer (EORTC) quality of life (QoL) survivorship questionnaire: An international collaboration coordinated by the EORTC to assess the acceptability, importance and relevance of putative items on the overall survivorship QoL questionnaire and on disease-specific questionnaires for survivors of colorectal, prostate and breast cancer. (Principal Investigators: Prof Lonneke van de Poll-Franse and Prof Neil Aaronson)

SUMMA (Survivorship Issues in MelanoMa Patients Treated with Adjuvant Nivolumab): This study is exploring the short-term and longer-term quality of life, toxicity and survivorship issues experienced by people with stage III melanoma receiving adjuvant nivolumab, and also aims to identify biomarkers to improve risk stratification and predict treatment response, resistance and toxicity. (Principal Investigators: Dr Kortnye Smith and A/Prof Shahneen Sandhu)

Healthy Living after Cancer is a national dissemination and implementation study evaluating the integration of an evidence-based lifestyle intervention for cancer survivors into an existing telephone cancer information and support service delivered by Australian state-based Cancer Councils. Refer to the study protocol which has been published. (Principal Investigator: Prof Elizabeth Eakin)

FearLess is a stepped care intervention for people with advanced melanoma who have been treated with immunotherapy or targeted therapies, experiencing significant worry about cancer recurrence or progression. People may receive a self-management intervention or one-on-one psychological treatment. Health professionals will also be trained about interventions to manage fear of cancer recurrence. (Principal Investigator: Dr Maria Ftanou)

CanSleep is a stepped care intervention for cancer survivors experiencing sleep problems. People may receive a self-management intervention, group-based or one-on-one psychological treatment. Health professionals will also be trained about interventions to detect and manage sleep problems in survivors. (Principal Investigator: Dr Maria Ftanou)

A psychosexual intervention for couples within the first year of allogeneic stem cell transplantation: This is a pilot study that will screen for sexual issues in survivors post stem transplantation and will provide education and emotionally-focussed therapy for couples. (Principal Investigator: Dr Brindha Pillay)

A multimodal occupational rehabilitation program to support breast cancer survivors to return to work: This study examines the impact of a tailored, multimodal occupational rehabilitation program to support resumption of meaningful work for cancer survivors. (Principal Investigator: A/Prof Georgia Halkett)

STUDENT PROJECTS

CURRENT

Facilitators and barriers to routine use of patient-reported outcomes in clinical settings. Honours, Department of Pathology, University of Melbourne.

COMPLETED

Evidence-based follow-up for colorectal cancer survivors in Victoria. Doctor of Medicine Research Project, The University of Melbourne, completed July 2019

Patient-reported outcomes of breast cancer survivors: a systematic review and cross sectional study. Honours, Department of Pathology, University of Melbourne, completed October 2018.

Return to work in survivors of human papillomavirus-associated oropharyngeal cancer. Doctor of Medicine Research Project, The University of Melbourne, completed July 2018.

Opportunities for students

We are currently recruiting an Honours student to commence in 2020 for a project titled “How do we define and measure optimal care for cancer survivors?”

The aims of this project are to define standards of quality survivorship care and develop a set of measurable quality indicators using systematic review and a Delphi process. Outcomes will be used to benchmark current practice and facilitate service improvement across Victoria.

Please contact Dr Karolina Lisy ([email protected]) for more information.

Publications & presentations

2019

Return to work in survivors of human papillomavirus-associated oropharyngeal cancer: an Australian experience. Morales CSZ, McDowell L, Lisy K, Piper A, Jefford M.

The survivorship experience for patients with metastatic melanoma on immune checkpoint and BRAF-MEK inhibitors. Lai-Kwon J, Khoo C, Lo S, Milne D, Mohamed M, Raleigh J, Smith K, Lisy K, Sandhu S, Jefford M.

Identifying the most prevalent unmet needs of cancer survivors in Australia: a systematic review. Lisy K, Langdon L, Piper A, Jefford M.

Building Personalized Cancer Follow-up Care Pathways in the US: Lessons Learned from Implementation in England, Northern Ireland, and Australia. Alfano CM, Jefford M, Maher J, Birken SA, Mayer DK.

A longitudinal study of four unique trajectories of psychological distress in cancer survivors after completing potentially curative treatment. Lotfi-Jam K, Gough K, Schofield P, Aranda S, Jefford M.

Patient-reported outcomes of sexual and gender minority cancer survivors in Australia. Lisy K, Ward A, Schofield P, Hulbert-Williams N, Bishop J, Jefford M.

2018

The current state of cancer rehabilitation in Australia. Lisy K, Denehy L, Chan RJ, Khan F, Piper A, Jefford M.

Experiences and unmet needs of lesbian, gay and bisexual people with cancer care: a systematic review and meta-synthesis. Lisy K, Peters MDJ, Schofield P, Jefford M.

Developing written information for cancer survivors from culturally and linguistically diverse backgrounds: lessons learnt. Wiley G, Piper A, Butow P, Schofield P, Douglas F, Roy J, Nolte L, Jefford M.

2017

SCORE: Shared care of Colorectal cancer survivors: protocol for a randomised controlled trial. Jefford M, Emery J, Grunfeld E, Martin A, Rodger P, Murray AM, De Abreu Lourenco R, Heriot A, Phipps-Nelson J, Guccione L, King D, Lisy K, Tebbutt N, Burgess A, Faragher I, Woods R, Schofield P.

Provider Roles in Survivorship Care: Moving Beyond Surveys of Patient Preference (letter). Lisy K, Emery JD, Jefford M.

Improving care for cancer survivors. Expert Review of Quality of Life in Cancer Care. Lai-Kwon J, Jefford M.

A rapid review of needs assessment tools for post-treatment cancer survivors. Jiao M, Hall AE, Nolte L, Piper A, Jefford M. 

Transforming Cancer Survivorship Care: An Australian Experience. Kinnane NA, Piper A, Wiley G, Nolte L, Evans J, Jefford M.

Patient-reported outcomes in cancer survivors: a population-wide cross-sectional study. Jefford M, Ward AC, Lisy K, Lacey K, Emery JD, Glaser AW, Cross H, Krishnasamy M, McLachlan SA, Bishop J.

How will cancer survivors use survivorship care plans? Kinnane N, Piper A, Jefford M.

2016

The Impact of Survivorship Care Planning on Patients, General Practitioners, and Hospital-Based Staff. Nolte L, Kinnane N, Lai-Kwon J, Gates P, Shilkin P, Jefford M.

Development and evaluation of an online educational resource about cancer survivorship for cancer nurses: a mixed-methods sequential study. Shaw T, Yates P, Moore B, Ash K, Nolte L, Krishnasamy M, Nicholson J, Rynderman M, Avery J, Jefford M.

A clinical placement program for primary care professionals at a comprehensive cancer centre. Evans J, Nolte L, Piper A, Simkiss L, Whitfield K, Jefford M.

The ProCare Trial: a phase II randomised controlled trial of shared care for follow-up of men with prostate cancer. Emery JD, Jefford M, King M, Hayne D, Martin A, Doorey J, Hyatt A, Habgood E, Lim T, Hawks C, Pirotta M, Trevena L, Schofield P.

A randomized controlled trial of a nurse-led supportive care package (SurvivorCare) for survivors of colorectal cancer. Jefford M, Gough K, Drosdowsky A, Russell L, Aranda S, Butow P, Phipps-Nelson J, Young J, Krishnasamy M, Ugalde A, King D, Strickland A, Franco M, Blum R, Johnson C, Ganju V, Shapiro J, Chong G, Charlton J, Haydon A, Schofield P.

2015

Healthy Living after Cancer: a dissemination and implementation study evaluating a telephone-delivered healthy lifestyle program for cancer survivors. Eakin EG, Hayes SC, Haas MR, Reeves MM, Vardy JL, Boyle F, Hiller JE, Mishra GD, Goode AD, Jefford M, Koczwara B, Saunders CM, Demark-Wahnefried W, Courneya KS, Schmitz KH, Girgis A, White K, Chapman K, Boltong AG, Lane K, McKiernan S, Millar L, O'Brien L, Sharplin G, Baldwin P, Robson EL.

Implementing novel models of posttreatment care for cancer survivors: Enablers, challenges and recommendations. Jefford M, Kinnane N, Howell P, Nolte L, Galetakis S, Mann GB, Naccarella L, Lai-Kwon J, Simons K, Avery S, Thompson K, Ashley D, Haskett M, Davies E, Whitfield K.

"I might not have cancer if you didn't mention it": a qualitative study on information needed by culturally diverse cancer survivors. O'Callaghan C, Schofield P, Butow P, Nolte L, Price M, Tsintziras S, Sze M, Thein T, Yiu D, Mireskandari S, Goldstein D, Jefford M.

Psychological distress, quality of life, symptoms and unmet needs of colorectal cancer survivors near the end of treatment. Russell L, Gough K, Drosdowsky A, Schofield P, Aranda S, Butow PN, Westwood JA, Krishnasamy M, Young JM, Phipps-Nelson J, King D, Jefford M.