Patient engagement in research with older adults with cancer

Puts, Martine; Sattar, Schroder; Ghodraty-Jabloo, Vida; Hsu, Tina; Fitch, Margaret I.; Szumacher, Ewa; Ayala, Ana Patricia; Alibhai, Shabbir M.H.

doi:10.1016/j.jgo.2017.05.002

Cited by 24 publications

(34 citation statements)

References 36 publications

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“…Potential benefits include feelings of empowerment and value and changed attitudes toward clinical research. 7 As the COACH trial drew to a close, a special meeting was conducted to allow members to reflect on their experience and provide feedback regarding barriers to and facilitators of engaging with the research team. SCOREboard members experienced benefits similar those reported in the study by Puts et al 7 and found that participation in SCOREboard was a positive educational experience ( Table 2).…”

Section: Effect Of Active Engagement On Scoreboard Members and Valuabmentioning

confidence: 99%

“…Active engagement of stakeholder partners (patients, family members, caregivers, and organizations that are representative of the population of interest in a study), as defined by the Patient‐Centered Outcomes Research Institute (PCORI), has been increasingly regarded as an essential component of research, in which stakeholder experiences and perspectives can thoroughly guide and inform research processes . The participation of stakeholder partners in clinical research makes research more meaningful and relevant, increases the generalizability and attractiveness of research findings to patients and clinicians, and aids in the translation of research findings into clinical practice . Partner engagement is mutually beneficial to partners and researchers.…”

Section: Introductionmentioning

confidence: 99%

Section: Introductionmentioning

confidence: 99%

“…Puts et al summarized the benefits experienced by partners who were actively engaged in clinical research. Potential benefits include feelings of empowerment and value and changed attitudes toward clinical research . As the COACH trial drew to a close, a special meeting was conducted to allow members to reflect on their experience and provide feedback regarding barriers to and facilitators of engaging with the research team.…”

Section: Introductionmentioning

confidence: 99%

“…[2][3][4] The participation of stakeholder partners in clinical research makes research more meaningful and relevant, increases the generalizability and attractiveness of research findings to patients and clinicians, and aids in the translation of research findings into clinical practice. 3,[5][6][7][8] Partner engagement is mutually beneficial to partners and researchers. Patient partners have reported feelings of empowerment and value, a sense of cohesiveness, and having a better understanding of research, which collectively resulted in positive attitudes toward clinical research.…”

Section: Introductionmentioning

confidence: 99%

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Engaging older patients with cancer and their caregivers as partners in cancer research

Gilmore

Canin

Whitehead

et al. 2019

Cancer

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Active patient partner engagement with Stakeholders for Care in Oncology and Research for our Elders board (a diverse group of older patients with cancer, caregivers of older patients with cancer, survivors, and patient advocates) to conduct what, to the authors' knowledge, is the largest randomized geriatric assessment clinical trial published to date has been shown to be feasible and to result in tangible and invaluable benefits for both the research team and patient partners alike. Actively engaging patient partners should be an essential component of the development, conduct, and completion of all clinical research.

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Section: Effect Of Active Engagement On Scoreboard Members and Valuabmentioning

confidence: 99%

Section: Introductionmentioning

confidence: 99%

Section: Introductionmentioning

confidence: 99%

Section: Introductionmentioning

confidence: 99%

Section: Introductionmentioning

confidence: 99%

See 3 more Smart Citations

Engaging older patients with cancer and their caregivers as partners in cancer research

Gilmore

Canin

Whitehead

et al. 2019

Cancer

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The impact of genetic counseling on patient engagement in a specialty cancer clinic

Zakas

Leifeste

Dudley

et al. 2019

Journal of Genetic Counseling

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The identification of patient outcomes unique to the field of genetic counseling has become a recent priority of the profession. Current health-care efforts have targeted patient engagement as an outcome capable of improving population health and reducing health-care costs. This study analyzed patient engagement levels among 182 participants who underwent genetic counseling for gastrointestinal (GI) cancer risk assessment in an outpatient specialty clinic. Patients seen at the UPMC Hereditary GI Tumor Program completed a validated patient engagement measure, the Altarum Consumer Engagement (ACE), prior to undergoing genetic counseling and again three months after enrollment. Paired t test analysis was conducted to assess the changes in Total ACE scores, and within the following three domains: Navigation, Informed Choice, and Commitment. In the sample of 182 participants, Total ACE scores increased after genetic counseling (by 5.7%; p < .0001), as did all three domains (Commitment p = .0008; Navigation p = .0008; and Informed Choice p = .0016). This study is the first known report of patient engagement levels in individuals undergoing genetic counseling in a specialty cancer clinic and suggests that genetic counseling improves patient engagement levels. K E Y W O R D S

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Systematic review of self‐management interventions for older adults with cancer

et al. 2021

Self Cite

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Aim The purpose of this systematic review was to determine the effectiveness of self‐management interventions for older adults with cancer and to determine the effective components of said interventions. Methods We conducted a systematic review of self‐management interventions for older adults (65+) with cancer guided by the Preferred Reporting Items for Systematic Reviews and Meta‐Analysis statement. We conducted an exhaustive search of the following databases: Ageline, AMED, ASSIA, CINAHL, Cochrane, Embase, Medline, PsychINFO, and Sociological Abstracts. We assessed for quality using the Cochrane Risk of Bias tool and Down & Black for quasi‐experimental studies, with data synthesized in a narrative and tabular format. Results Sixteen thousand nine hundred and eight‐five titles and abstracts were screened, subsequently 452 full‐text papers were reviewed by two independent reviewers, of which 13 full‐text papers were included in the final review. All self‐management interventions included in this review measured Quality of Life; other outcomes included mood, self‐care activity, supportive care needs, self‐advocacy, pain intensity, and analgesic intake; only one intervention measured frailty. Effective interventions were delivered by a multidisciplinary teams (n = 4), nurses (n = 3), and mental health professionals (n = 1). Self‐management core skills most commonly targeted included: problem solving; behavioural self‐monitoring and tailoring; and settings goals and action planning. Conclusions Global calls to action argue for increased emphasize on self‐management but presently, few interventions exist that explicitly target the self‐management needs of older adults with cancer. Future work should focus on explicit pathways to support older adults and their caregivers to prepare for and engage in cancer self‐management processes and behaviours.

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Patient engagement in research with older adults with cancer

Cited by 24 publications

References 36 publications

Engaging older patients with cancer and their caregivers as partners in cancer research

Engaging older patients with cancer and their caregivers as partners in cancer research

The impact of genetic counseling on patient engagement in a specialty cancer clinic

Systematic review of self‐management interventions for older adults with cancer

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