Information needs of cancer patients in west Scotland: cross sectional survey of patients' views

Meredith, Catherine; Symonds, Paul; Webster, Lorraine K.; Lamont, D. W.; Pyper, E.; Gillis, Charles R.; Fallowfield, Lesley

doi:10.1136/bmj.313.7059.724

Cited by 501 publications

(353 citation statements)

References 9 publications

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“…Even though both the verbal and written information on the first subject was more comprehensive than for the apparently more straightforward concept of nonrandomised treatment, this comprehensiveness may be requested by the patients. This concept of comprehensive information is in accordance with a study on 250 patients at an oncology centre in Scotland, which showed that 79% of patients wanted as much information as possible (Meredith et al, 1996). The proportion of patients who wanted to know the chance of cure and the side effects of therapy was 91 and 94%, respectively.…”

Section: Resultssupporting

confidence: 75%

“…No differences were noted among patients informed about randomised or nonrandomised experimental treatments. Bennett and Alison, 1996), and surveys have shown that patients want a high degree of information and the information usually produces a positive effect (Fallowfield et al, 1995;Meredith et al, 1996). Others have pointed out that the information needs to be individualised , and also the expectations of the patients have been evaluated in relation to satisfaction with the consultation (Brown et al, 1997).…”

Section: Resultsmentioning

confidence: 99%

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Patient–physician communication concerning participation in cancer chemotherapy trials

2004

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Cancer patients demand a high level of involvement in decisions concerning treatment. Many patients are informed about experimental trials, and especially the first consultation may be crucial for the future communication and treatment process. Patients with nonresectable non-small-cell lung cancer or colorectal cancer informed about experimental chemotherapy completed a questionnaire on satisfaction with the communication process, general attitude towards experimental treatments, the substance of information, and personal contact with the physician following their first consultation in a medical oncology unit. Physicians completed a questionnaire on their perception of the patients' satisfaction. Among 68 physician -cancer patient pairs, 29 patients were informed on chemotherapy in randomised trials and 39 in nonrandomised studies. The general attitude towards experimental treatment was positive or very positive in 71% of patients. Information on the treatment was perceived as completely adequate in 93% of patients informed on randomised and in 67% informed on nonrandomised trials. Physicians underestimated the patients' satisfaction with the overall communication process, the personal contact, the patients' perceived sufficiency of the specific treatment information and their ability to decide on study entry. In conclusion, considerable differences were observed between patients informed about experimental chemotherapy in randomised and nonrandomised trials, both with respect to their perception of how adequate the information on the specific treatments were, and whether it was sufficient for decisions on study entry. This study type effect should be accounted for in future evaluations of communication and patient satisfaction. The data also support the fact that cancer patients have a desire for and ability to understand rather detailed and comprehensive treatment information.

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Section: Resultssupporting

confidence: 75%

Section: Resultsmentioning

confidence: 99%

Patient–physician communication concerning participation in cancer chemotherapy trials

2004

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“…This study reinforces data from the west of Scotland (Meredith et al, 1996) and the large survey of Jenkins et al (2001), which show that most cancer patients want as much information as possible. This is also true of Asian patients in Leicestershire.…”

Section: Discussionsupporting

confidence: 88%

“…Many patients had more than one treatment modality. Patients' views about information were elicited by a questionnaire widely used in the past (Cassileth et al, 1980;Jenkins et al, 2001) and modified in the light of experience in the west of Scotland (Meredith et al, 1996). It consisted of two parts, one of which described their general preference for information.…”

Section: Methodsmentioning

confidence: 99%

“…(Fallowfield et al, 1990). A 250 patient stratified sample typical of West of Scotland cancer patients (Meredith et al, 1996) and a more heterogeneous study of 2331 patients (Jenkins et al, 2001) showed the vast majority of British cancer patients want to know the diagnosis and specific details about treatment and prognosis. However, the information needs of British non-white ethnic minorities have never been studied.…”

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confidence: 99%

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Information needs of Asian and White British cancer patients and their families in Leicestershire: a cross-sectional survey

et al. 2004

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The aim of this questionnaire survey was to find the information needs of British Asian cancer patients. An additional objective was to find the extent of family involvement when the patient was given the cancer diagnosis and the patients' views about information disclosure. We interviewed 82 Asian patients and 220 random white control patients. More white British patients gave positive answers to the statement 'I want as much information as possible' than Asian patients (93.1 vs 77.5%, Pp0.001). However, 92.6% of Asian patients wanted to know if they had cancer. Many more Asians (66.2 vs 5.1%, Po0.001) indicated the general practitioner (GP) as the preferred source of information. This may be because 56% of English-speaking Asian patients would prefer to discuss their illness in their mother tongue. In Leicester, many Asian patients have Asian GPs. The vast majority of both Asian and British patients agreed that family or friends should be present when patients are given the cancer diagnosis. However, Asians were more likely to be alone (24 vs 15%, P ¼ 0.008) when told they have had cancer. The majority of patients (both white British and Asian) want to control the disclosure of information to relatives and friends and would like to be present at doctor/family meetings. (Fallowfield et al, 1990). A 250 patient stratified sample typical of West of Scotland cancer patients (Meredith et al, 1996) and a more heterogeneous study of 2331 patients (Jenkins et al, 2001) showed the vast majority of British cancer patients want to know the diagnosis and specific details about treatment and prognosis. However, the information needs of British non-white ethnic minorities have never been studied.Leicester is a multicultural city of 280 000. The 2001 Census (Office for National Statistics, 2001) described only 63.9% of the population as white. The biggest minority population (25.7%) was described in the census as Indian, although some of these people would use a different name such as African/Asian to describe their origin. It has been predicted that by 2011, 50% of the population of Leicester will be of Asian origin (Rex, 1999).Cancer registration statistics collected between the start of 1990 and the end of 1999 for the city of Leicester showed that South Asian patients had a lower cancer incidence than non-South Asians (Smith et al, 2003a). When adjusted for age and socioeconomic deprivation, incidence rate ratio (IRR) was 0.61 for male and 0.75 for female population. This pattern changed significantly with age. Although older Asians had much lower rates of cancer than the rest of the population, younger Asians were at increased risk compared with non-Asians. Comparing incidence rate ratios between 1990 -1994 and 1995 -1999 there has been a marked rise in the incidence of colorectal cancer (IRR ¼ 2.33) and breast cancer (IRR ¼ 1.37) in Asian women. In contrast, these rates decreased in the rest of the population. There has also been a rise in the incidence of prostate cancer (IRR ¼ 1.71) and lung cancer (IRR ¼ 1.39) in ...

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Evaluation of a patient file folder to improve the dissemination of written information materials for cancer patients

Whelan

Rath

Willan

et al. 1998

Cancer

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Information needs of cancer patients in west Scotland: cross sectional survey of patients' views

Cited by 501 publications

References 9 publications

Patient–physician communication concerning participation in cancer chemotherapy trials

Patient–physician communication concerning participation in cancer chemotherapy trials

Information needs of Asian and White British cancer patients and their families in Leicestershire: a cross-sectional survey

Evaluation of a patient file folder to improve the dissemination of written information materials for cancer patients

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