Identifying the Top Research Priorities in Postmastectomy Breast Cancer Reconstruction: A James Lind Alliance Priority Setting Partnership
For which topic were research priorities identified?
postmastectomy breast cancer reconstruction
In which location was the research priority setting conducted?
North America - Canada
Why was it conducted at all?
Breast cancer is the most common form of cancer among women in Canada1 and worldwide. It was estimated that approximately 26 900 Canadian women were diagnosed with breast cancer in 2019 which accounts for 25% of all cancer cases. With improvements in the detection and treatment of breast cancer, the 5-year survival rate has increased to 88% for this disease. It is, therefore, imperative that breast cancer survivorship research broadens its scope to include areas such as postmastectomy breast reconstruction (PMBR) that may combat adverse effects following cancer surgery in the breast cancer survivorship period. Increased patient demand for PMBR, concerns with the low level of evidence for many PMBR techniques and the inequitable access to PMBR across Canada have highlighted the urgent need for better research to inform patients, providers and policy-makers about optimal practices in PMBR.
What was the objective?
to identify the most important unanswered research questions in breast cancer reconstruction (PMBR) from the joint perspectives of patients, caregivers, clinicians and support organizations across Canada
What was the outcome?
a ranking list of 10 research questions
How long did the research prioritization take?
May 2018 - July 2019
Which methods were used to identify research priorities?
How were the priorities for research identified exactly?
Step 1: setting up PSP: steering group established, scope defined. Step 2: gathering uncertainties: via survey, 3168 research questions were submitted. Step 3: data analysis: duplicates, questions unanswerable by research, out of scope questions and personal narratives were removed, 2931 submissions were in scope and 237 submissions were out-of-scope, similar and duplicate questions were grouped together resulting 86 summary questions, check against evidence: 86 summary questions were checked against 36 retrieved systematic reviews, clinical trials and guidelines, no questions had sufficiently been answered, steering group then found 40 of the 86 questions to be either not researchable or duplicate questions, these questions were removed, steering group reviewed the remaining 46 questions, resulting in a total of 48 uncertainties that moved forward. Step 4: interim ranking: participants were asked to select and rank the top 10 uncertainties from the list of 48 uncertainties, the top 25 questions moved forward. Step 5: workshop: workshop participants were divided into groups, each with a balanced distribution of patients, caregivers and clinicians, each group was asked to rank the treatment uncertainty questions through group discussions using the modified nominal group technique, all group rankings were then aggregated and were brought to the whole group for discussion, participants were reallocated into new groups to consider the aggregate list of the 25 ranked questions, the top 10 uncertainties were agreed by consensus
Which stakeholders took part?
Survey: 713 participants: 73% patients or caregivers, 21.11% clinicians, 40% nurses. Interim ranking: 488 participants: 86% patients and caregivers. Workshop: 22 participants: 13 breast cancer survivors or family members or caregiver, and 9 healthcare professionals including plastic surgeons, surgical oncologists, a radiation oncologist, a medical oncologist, a nurse, a social worker and a physiotherapist.
How were stakeholders recruited?
The project team promoted the survey through partner organizations’ websites, and their social media platforms. The project team mailed postcards out to surgeons in five Canadian provinces to be distributed to their patients. The project team sent out email blasts to members of clinical associations. The project team also sent out email blasts to breast cancer survivors who attended the Breast Cancer Awareness events held throughout Canada. The project team placed an advertisement in four Canadian newsletters and google advertisements to target a demographic that keyed in phrases such as ‘breast reconstruction’ or ‘breast cancer’.
Were stakeholders actively involved or did they just participate?
Stakeholders not only participated but were also actively involved in the research prioritization process: They were part of a steering group. The steering group consisted of five breast reconstruction patients, five plastic surgeons, one general surgeon, one nurse, two community partners who were also breast cancer survivors, one JLA advisor and one project coordinator. The steering group was tasked with overseeing the partnership by taking part in bimonthly meetings and making critical decisions at key intervals of the priority setting partnership.