As the bell tolls: a foundation study on pancreatic cancer consumer's research priorities

From a maximum of 22 points, three qualitative studies scored 17 points and two scored 18 points.

“From a maximum of 22 points, three studies scored 17 points [27–30] and two studies scored 18 points [31].”

Informal caregivers of pancreatic cancer patients have an unmet need for support and briefings from health care professionals.

“Three studies raised the need for support and briefings from health care professionals [28, 31] or a support system for informal caregivers [27, 31].”

Informal caregivers reported needing to ask clear questions to a provider or have someone explain things to them, representing unmet information needs.

“They reported they needed to ask clear questions to a provider [31] or have someone explain things to them [27], both of which represent unmet information needs.”

Eight included studies were cross-sectional studies and one study was a prospective cohort design.

“Eight studies were cross-sectional studies [5, 27–33]. One study was a prospective cohort design [6].”

Data was collected through questionnaires alone in four studies, semi-structured interviews with individual participants in three studies, focus groups in two studies, and questionnaire and semi-structured interview together in one study.

“Data was collected through questionnaires alone in four studies [5, 32, 33], semi-structured interviews with individual participants in three studies [29–31], focus groups in two studies [27, 28] and questionnaire and semi-structured interview together in one study [29].”

Five included studies were conducted in the USA, three in Australia, and one in Denmark.

“Five studies (three qualitative, two quantitative) were conducted in the USA [5, 28, 29, 31, 33], three (two qualitative, one quantitative) in Australia [27, 30, 32] and one quantitative study in Denmark [6].”

Informal caregivers of pancreatic cancer patients have an unmet need for better clinical communication.

“Two studies raised the need for better clinical communication [27, 29].”

Informal caregivers described clinical communication at the time of diagnosis as insensitive.

“Informal caregivers described clinical communication at the time of diagnosis as insensitive [27].”

Four studies reported qualitative data on unmet needs of informal caregivers of pancreatic cancer patients, and no quantitative data on unmet needs was available.

“Four studies reported qualitative data on unmet needs of informal caregivers [27–29, 31]. No quantitative data was available on unmet needs.”

Informal caregivers described the delivery of diagnosis as lacking empathy and failing to treat the patient as a whole person.

“They described the delivery of diagnosis as lacking empathy, as exemplified by phrases such as ‘brutal’ or ‘not warm’, and failing to treat the patient as a whole person [27].”

Informal caregivers suggested the development of guidelines or protocols to improve clinical communication.

“Informal caregivers suggested the development of ‘guidelines’ or ‘protocols’ to improve clinical communication in one study [27].”

The lack of consideration for the relationship between researcher and participants and unsatisfactory data analysis were the two most frequent reasons points were deducted during quality assessments.

“The lack of consideration for the relationship between researcher and participants [30, 31] and unsatisfactory data analysis [27–30] were the two most frequent reasons points were deducted during quality assessments.”