Perceptions of Clinical Trial Participation Among Women of Varying Health Literacy Levels

Burks, Allison C; Doede, Aubrey L.; Showalter, Shayna L.; Keim‐Malpass, Jessica

doi:10.1188/20.onf.273-280

Cited by 10 publications

(20 citation statements)

References 24 publications

Supporting

Mentioning

Contrasting

Unclassified

Order By: Relevance

“…Eight qualitative studies were identified and add the patient voice to the findings of this review (Table 3). Studies included patients with prostate cancer [76][77][78], breast cancer [79,80] and haematological malignancies [81]. One included patients with different primary tumours [82] and one study did not report on tumour site [83].…”

Section: Objective 2: Qualitative Studies Exploring the Role And Consequences Of Health Literacy As Patients With Cancer Access Understanmentioning

confidence: 99%

“…. I just decided I didn't want to do the traditional" (female phase 2 clinical trial participant, adequate health literacy) [80]. Learning from other patients about their experiences, often through support groups or organisations, allowed participants to develop a greater understanding of their diagnosis and treatment [77,78,81].…”

Section: Objective 2: Qualitative Studies Exploring the Role And Consequences Of Health Literacy As Patients With Cancer Access Understanmentioning

confidence: 99%

“…Only occasionally, these social connections acted as barriers, such as when the knowledge imparted was inaccurate or led to increased fear [83]. The internet was a valuable resource for many participants, who were able to use it to find further information and additional support [76,77,80,81]: "I have done research through the Internet. The Leukemia Society, I called them, and they got me, they hooked me up with another patient that had PLOS ONE To explore whether the scores of and responses to a Health Literacy Questionnaire (HLQ) can be used to identify individuals in need of information and support, to reveal differences in perception and understanding in health related situations within couples and to explore whether the health literacy domains constituting the HLQ emerged as themes important to the men and their spouses.…”

Section: Objective 2: Qualitative Studies Exploring the Role And Consequences Of Health Literacy As Patients With Cancer Access Understanmentioning

confidence: 99%

“…Situational influences Relying on others [81] • Networks Involvement of their spouses and the people around them [76] Group information processing [77] Recognising opportunities to learn from each other [83] Social and informational networks [78] Their use of the internet for information retrieval [76] Pragmatic decision making [80] Situational influences Overcoming professional medical language [78] • System Self-management support [82] Delivery system design [82] Support from and interaction with healthcare professionals [76] Opportunities for practical services and programmes for health literacy in relation to cancer [83] Inequality of access to health information [79] They did not tell me [81] Decision support [82] Confidence in provider recommendation [80] Personal influences Recognising susceptibility to cancer [83] Community characteristics [82] Spiritual and emotional influences [78] Literacy levels [78] Silence among men [78] Information processing…”

Section: Meta-themes Themes From Original Papersmentioning

confidence: 99%

See 3 more Smart Citations

The role of health literacy in cancer care: A mixed studies systematic review

Holden

Wheelwright

Harle³

et al. 2021

PLoS ONE

View full text Add to dashboard Cite

Background Patients diagnosed with cancer face many challenges and need a good understanding of their diagnosis and proposed treatments to make informed decisions about their care. Health literacy plays an important role in this and low health literacy has been associated with poorer outcomes. The aims of this review are to identify which outcomes relate to health literacy in patients with cancer, and to combine this through a mixed studies approach with the patient experience as described through qualitative studies. Methods Four electronic databases were searched in January 2021 to identify records relating to health literacy and patients with cancer. Records were independently screened then assessed for inclusion by two reviewers according to the following criteria: patients aged ≥18 years with cancer, English language publication AND health literacy measured with validated tool and measured outcome associated with health literacy OR qualitative study exploring the role of health literacy as patients make decisions about health. Quality was independently assessed by two reviewers. A narrative synthesis was performed, and findings integrated through concept mapping. This systematic review was registered with PROSPERO, entry CRD42020166454. Results 4441 records were retrieved. Following de-duplication, 2496 titles and abstracts were screened and full texts of 405 papers were reviewed for eligibility. 66 papers relating to 60 studies met the eligibility criteria. Lower health literacy was associated with greater difficulties understanding and processing cancer related information, poorer quality of life and poorer experience of care. Personal and situational influences contributed to how participants processed information and reached decisions about their care. Conclusion This review highlights the important role of health literacy for patients with cancer. Outcomes are poorer for those who experience difficulties with health literacy. Further efforts should be made to facilitate understanding, develop health literacy and support patients to become more involved in their care.

show abstract

Section: Objective 2: Qualitative Studies Exploring the Role And Consequences Of Health Literacy As Patients With Cancer Access Understanmentioning

confidence: 99%

Section: Objective 2: Qualitative Studies Exploring the Role And Consequences Of Health Literacy As Patients With Cancer Access Understanmentioning

confidence: 99%

Section: Objective 2: Qualitative Studies Exploring the Role And Consequences Of Health Literacy As Patients With Cancer Access Understanmentioning

confidence: 99%

Section: Meta-themes Themes From Original Papersmentioning

confidence: 99%

See 2 more Smart Citations

The role of health literacy in cancer care: A mixed studies systematic review

Holden

Wheelwright

Harle³

et al. 2021

PLoS ONE

View full text Add to dashboard Cite

show abstract

“…The knowledge about clinical research and trials re ects the need for greater attention to health literacy and empowerment. [23][24][25][26] The promotion of clinical research and trials among healthy people, before they become patients, is also needed to facilitate participation in clinical research and decisions. 14,27 In general, there is a positive attitude towards clinical research and trials, recognizing the bene ts for patients and society; however, responders showed uncertainty when evaluating the balance between risk and bene ts.…”

Section: Discussionmentioning

confidence: 99%

Knowledge and Attitudes Towards Clinical Trials Among Women with Ovarian Cancer: Results of The Acto Study

Mosconi¹,

Roberto²,

Cerana³

et al. 2021

Preprint

View full text Add to dashboard Cite

BackgroundAlthough there are several initiatives by research groups, regulatory authorities, and scientific associations to engage citizens/patients in clinical research, there are still obstacles to participation. Among the main discouraging aspects are incomplete understanding of the concepts related to the clinical trial, and the scant, sometimes confused, explanations given. The aim of this observational, cross-sectional multicenter study is to investigate knowledge, attitudes and trust in clinical research.We conducted a survey among women with ovarian cancer at their first follow-up visit or first therapy session, treated in centers belonging to the Mario Negri Gynecologic Oncology (MaNGO) and Multicenter Italian Trials in Ovarian Cancer (MITO) groups. A questionnaire on knowledge, attitudes and experience was assembled ad hoc after a literature review and a validation process involving patients of the Alliance against Ovarian Cancer (ACTO).ResultsFrom 25 centers 348 questionnaire were collected; 73.5% of responders were 56 years or older, 54.8% had a high level of education, more than 80% had no experience of trial participation. Among participants 59% knew what clinical trials are and 71% what the informed consent is. However more than half did not know the meaning of the term randomization. More than half (56%) were in favor of participating in a clinical trial, but 35% were not certain. Almost all responders acknowledged the doctor’s important role in decision-making. Patients associations were recognized as playing a powerful role in the design and planning of clinical trials. ConclusionsThis study helps depict the knowledge and attitudes of women with ovarian cancer in relation to clinical trial, suggesting initiatives aimed at improving trials’ culture, literacy and compliance, and fresh ways of communication between doctors and patients.

show abstract