Top 10 research priorities in head and neck cancer: Results of an Alberta priority setting partnership of patients, caregivers, family members, and clinicians

Lechelt, Leah A; Rieger, Jana; Cowan, Katherine; Debenham, Brock; Krewski, Bernie; Nayar, Suresh; Regunathan, Akhila; Seikaly, Hadi; Singh, Ameeta E.; Laupacis, Andreas; Head, Alberta

doi:10.1002/hed.24998

Cited by 29 publications

(55 citation statements)

References 15 publications

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“…On an international level, priority setting partnership research has addressed a wide range of health conditions including cancer (23), mental health (24), women's health conditions (25), and musculoskeletal diseases (26). Examples of current Canadian priority setting partnerships include head and neck cancer (27) and hypertension management (28). Another Canadian study with dialysis patients and caregivers (16) outlined a priority setting process that included: (a) formation of a steering committee, including patients and clinicians; (b) entering priority setting partnerships as identified by the steering committee; (c) gathering research uncertainties or questions; (d) categorizing or grouping questions; and (e) determining the top 10 research priorities (with patients, caregivers, and clinicians in full-day workshops).…”

Section: Methods and Study Designmentioning

confidence: 99%

Study Protocol: Determining Research Priorities of Young Albertan Families (The Family Research Agenda Initiative Setting Project—FRAISE)—Participatory Action Research

Bright

Ginn

Keys

et al. 2018

Front. Public Health

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Introduction: Pregnancy and childrearing can be an exciting and stressful time for new parents. The maternal-child health landscape has changed dramatically over the last few decades and research priorities need to address these rapid changes. There have been limited attempts to engage and collaborate with members of the public to develop research priorities for families who are expecting or parenting an infant to age 24 months. The work that has been completed has attempted to identify parental preference for information delivery and barriers to uptake of parenting programs but has not investigated parental research priorities.Methods: In collaboration with provincial research units and strategic clinical networks (SCN), we will use principles of participatory action research (PAR) as our theoretical framework/method, and a modified James Lind Alliance priority setting approach to prioritize a list of research questions that parents/knowledge users believe will support the health of their families. This will result in a top 10 list of parent/knowledge user-identified research priorities. This project will consist of three phases. In the first phase, we developed a steering committee of parents/knowledge users, healthcare providers, community agencies, and researchers to design a survey about health priorities for families. In the second phase, we will distribute the survey to diverse groups of parents/knowledge users/providers and hold a series of meetings to identify and prioritize potential questions from new parents about health issues from conception to age 24 months. In the third phase, we will collaboratively disseminate and translate findings.Discussion: This study will highlight parental health concerns and recommend parent-identified research priorities to inform future research projects needed to support the health of families between conception to age 24 months. Understanding the health research priorities of families in the community will help ensure future research contributes to meaningful changes in the health of young children, parents/knowledge users, and families.Ethics: This study and protocol have received ethical approved from the Conjoint Health Research Ethics Board at the University of Calgary (REB17-0014).Dissemination: The top 10 research priorities will be published and additional findings from the study will be distributed through pamphlets and newsletters.

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Section: Methods and Study Designmentioning

confidence: 99%

Study Protocol: Determining Research Priorities of Young Albertan Families (The Family Research Agenda Initiative Setting Project—FRAISE)—Participatory Action Research

Bright

Ginn

Keys

et al. 2018

Front. Public Health

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“…In palliative care, a range of priority setting processes have been undertaken nationally across different countries and internationally by various organisations, networks and individuals [13][14][15]. A large proportion have been developed specific to disease type, for example, in head and neck cancer [16], dementia [17], intellectual disability [18] and generic palliative care [19] to name but a few. Priorities have also been identified by care setting [20,21], patient demographic characteristics [22,23], discipline focus [24,25], and according to the specific components of palliative care such as pain [26] and spiritual care [27].…”

Section: Introductionmentioning

confidence: 99%

International palliative care research priorities: A systematic review

Hasson¹,

Nicholson

Muldrew³

et al. 2020

BMC Palliat Care

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Background: There has been increasing evidence and debate on palliative care research priorities and the international research agenda. To date, however, there is a lack of synthesis of this evidence, examining commonalities, differences, and gaps. To identify and synthesize literature on international palliative care research priorities originating from Western countries mapped to a quality assessment framework. Methods: A systematic review of several academic and grey databases were searched from January 2008-June 2019 for studies eliciting research priorities in palliative care in English. Two researchers independently reviewed, critically appraised, and conducted data extraction and synthesis. Results: The search yielded 10,235 articles (academic databases, n = 4108; grey literature, n = 6127), of which ten were included for appraisal and review. Priority areas were identified: service models; continuity of care; training and education; inequality; communication; living well and independently; and recognising family/carer needs and the importance of families. Methodological approaches and process of reporting varied. There was little representation of patient and caregiver driven agendas. The priorities were mapped to the Donabedian framework for assessing quality reflecting structure, process and outcomes and key priority areas. Conclusions: Limited evidence exists pertaining to research priorities across palliative care. Whilst a broad range of topics were elicited, approaches and samples varied questioning the credibility of findings. The voice of the care provider dominated, calling for more inclusive means to capture the patient and family voice. The findings of this study may serve as a template to understand the commonalities of research, identify gaps, and extend the palliative care research agenda.

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“…The number of patients in the studies ranged from one [64] to 168 [68] with a median of 16 patients. There were 11 (37%) studies where patients were engaged as a group with caregivers and/or other stakeholders (e.g., ex-patients, survivors, patient representatives/ advocates, or members of the public) [7,24,46,52,53,[57][58][59][60][61]72].…”

Section: Characteristics Of Included Studiesmentioning

confidence: 99%

“…Patients in these studies partnered in activities including, but not limited to: delineation of the scope of the partnership, contribution to study design, co-leadership on working groups during study execution, data analysis, dissemination activities, and adoption of decision-making roles on research steering/advisory committees [50,52,57,66]. Seven studies (23%) included patients in research priority setting at the broader level of biomedical specialty/ disease/condition, rather than at the individual study level [48,49,54,58,61,67,68]. These studies included patients who were representative of the condition as partners on research steering/advisory committees and who contributed to shared decision-making across the research study cycle.…”

Section: Patient Partner Research Roles: Research Stages and Activitiesmentioning

confidence: 99%

Partnering with frail or seriously ill patients in research: a systematic review

et al. 2020

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Background The expectation to include patients as partners in research has steadily gained momentum. The vulnerability of frail and/or seriously ill patients provides additional complexity and may deter researchers from welcoming individuals from this patient population onto their teams. The aim was to synthesize the evidence on the engagement of frail and/or seriously ill patients as research partners across the research cycle. Methods A systematic review was conducted using PRISMA guidelines. A search strategy included MEDLINE®, EMBASE®, Cumulative Index to Nursing and Allied Health Literature (CINAHL), and PsycINFO from database inception to April, 2019. Eligible studies were peer-reviewed qualitative, quantitative, and mixed methods research reporting on the engagement of frail and/or seriously ill patients as partners on research teams. The Mixed Methods Appraisal Tool was used to appraise study quality. Narrative analysis was conducted. Results Of 8763 citations, 30 were included. Most studies included individuals with cancer on the research team (60%). Barriers included: lack of time and resources (50%), discontinuity in contribution (37%), and concerns for well-being (33%). Facilitators included: trust and mutual respect (60%), structural accessibility (57%), flexibility in timing and methods of engagement (43%), and attention to care and comfort, (33%). Perceived impacts for patients included: renewed personal sense of agency (37%) and emotional/peer support (37%). Impacts for researchers included sensitization to the lived experience of disease (57%) and an increased appreciation of the benefits of patient engagement (23%). Research design, execution, and outcomes, developed with patients, were deemed more suitable, relevant and reflective of patients’ priorities. Conclusions There is emerging evidence to suggest that research partnerships with frail and/or seriously ill patients can be achieved successfully. Patients mostly report benefit from partnering with research teams. Frailty and/or serious illness do present legitimate concerns for their well-being but appear to be successfully mitigated when researchers ensure that the purpose of engagement is well-defined, the timing and methods of engagement are flexible, and the practical and emotional needs of patient partners are addressed throughout the process. Systematic review registration The systematic review protocol was registered with the International Prospective Register of Systematic Reviews PROSPERO (CRD42019127994).

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Top 10 research priorities in head and neck cancer: Results of an Alberta priority setting partnership of patients, caregivers, family members, and clinicians

Abstract: Nonresearchers can effectively collaborate to establish priorities for future research in head and neck cancer.

Cited by 29 publications

References 15 publications

Study Protocol: Determining Research Priorities of Young Albertan Families (The Family Research Agenda Initiative Setting Project—FRAISE)—Participatory Action Research

Study Protocol: Determining Research Priorities of Young Albertan Families (The Family Research Agenda Initiative Setting Project—FRAISE)—Participatory Action Research

International palliative care research priorities: A systematic review

Partnering with frail or seriously ill patients in research: a systematic review

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