Kirsten McCaffery

Supporting Patient Autonomy: The Importance of Clinician-patient Relationships

Personal autonomy is widely valued. Recognition of its vulnerability in health care contexts led to the inclusion of respect for autonomy as a key concern in biomedical ethics. The principle of respect for autonomy is usually associated with allowing or enabling patients to make their own decisions about which health care interventions they will or will not receive. In this paper, we suggest that a strong focus on decision situations is problematic, especially when combined with a tendency to stress the importance of patients’ independence in choosing. It distracts attention from other important aspects of and challenges to autonomy in health care. Relational understandings of autonomy attempt to explain both the positive and negative implications of social relationships for individuals’ autonomy. They suggest that many health care practices can affect autonomy by virtue of their effects not only on patients’ treatment preferences and choices, but also on their self-identities, self-evaluations and capabilities for autonomy. Relational understandings de-emphasise independence and facilitate well-nuanced distinctions between forms of clinical communication that support and that undermine patients’ autonomy. These understandings support recognition of the value of good patient-professional relationships and can enrich the specification of the principle of respect for autonomy.

Knowledge, attitudes, and behavioral intentions in relation to the early detection of colorectal cancer in the United Kingdom.

BACKGROUND Colorectal cancer (CRC) mortality is high. Understanding the social, psychological, and cognitive predictors of early detection practices such as screening may help improve CRC outcomes. This study examined knowledge of CRC and the relationship between knowledge, attitudes to cancer, and intentions to engage in early detection behaviors for CRC in a national representative population sample. METHOD An interview-based survey was carried out in a British population sample of adults ages 16 to 74 years (n = 1637), assessing knowledge, attitudes, and intention with regard to colorectal cancer. RESULTS Knowledge levels were very low; 58% (n = 995) of respondents could not list any colorectal cancer risk factors and 24% (n = 393) were unable to identify any warning signs for cancer. Knowledge was lower among men (chi(2)[2] = 52.8, P < 0.0001), younger respondents (chi(2)[10] = 79.9, P <.0001), and those with less education (chi(2)[4] = 73.9, P < 0.0001). Attitudes to cancer were more negative among women (chi(2) [2] = 7.4, P = 0.025), younger participants (chi(2)[10] = 22.4, P = 0.013), and those with less education (chi(2) [4] = 75.0, P < 0.0001). Low knowledge was associated with negative attitudes (P < 0.0001) and both factors were associated with lower intentions to participate in colorectal cancer screening (P < 0.0001). Multivariate analysis indicated that attitudes partially mediated the effect of knowledge on screening intentions. CONCLUSIONS Increasing knowledge may reduce negative public perceptions of cancer which may impact positively on intentions to participate in screening.

Assessing the value of diagnostic tests: a framework for designing and evaluating trials

The value of a diagnostic test is not simply measured by its accuracy, but depends on how it affects patient health. This article presents a framework for the design and interpretation of studies that evaluate the health consequences of new diagnostic tests

Social and psychological impact of HPV testing in cervical screening: a qualitative study

Objective: Human papillomavirus (HPV) testing has been proposed for inclusion in the UK cervical screening programme. While testing may bring some benefits to the screening programme, testing positive for HPV, a sexually transmitted virus, may have adverse social and psychological consequences for women. The aim of this study was to examine the social and psychological impact of HPV testing in the context of cervical cancer screening. Method: In-depth interviews generating qualitative data were carried out with 74 women participating in HPV testing in England between June 2001 and December 2003. Purposive sampling was used to ensure heterogeneity in age, ethnic group, marital status, socioeconomic background, cytology, and HPV results among participants. Results: Testing positive for HPV was associated with adverse social and psychological consequences, relating primarily to the sexually transmitted nature of the virus and its link to cervical cancer. Women described feeling stigmatised, anxious and stressed, concerned about their sexual relationships, and were worried about disclosing their result to others. Anxiety about the infection was widespread, but the impact of testing positive varied. The psychological burden of the infection related to women’s relationship status and history, their social and cultural norms and practices around sex and relationships, and their understanding of key features of HPV. Conclusion: HPV testing should be accompanied by extensive health education to inform women and to de-stigmatise infection with the virus to ensure that any adverse impact of the infection on women’s wellbeing is minimised.

Testing positive for Human Papillomavirus in routine cervical screening: examination of psychosocial impact

Objective  To examine the psychosocial impact of testing positive for high risk human papillomavirus (HPV) among women attending primary cervical screening.

A decision aid to support informed choices about bowel cancer screening among adults with low education: randomised controlled trial

Objective To determine whether a decision aid designed for adults with low education and literacy can support informed choice and involvement in decisions about screening for bowel cancer. Design Randomised controlled trial. Setting Areas in New South Wales, Australia identified as socioeconomically disadvantaged (low education attainment, high unemployment, and unskilled occupations). Participants 572 adults aged between 55 and 64 with low educational attainment, eligible for bowel cancer screening. Intervention Patient decision aid comprising a paper based interactive booklet (with and without a question prompt list) and a DVD, presenting quantitative risk information on the possible outcomes of screening using faecal occult blood testing compared with no testing. The control group received standard information developed for the Australian national bowel screening programme. All materials and a faecal occult blood test kit were posted directly to people’s homes. Main outcome measures Informed choice (adequate knowledge and consistency between attitudes and screening behaviour) and preferences for involvement in screening decisions. Results Participants who received the decision aid showed higher levels of knowledge than the controls; the mean score (maximum score 12) for the decision aid group was 6.50 (95% confidence interval 6.15 to 6.84) and for the control group was 4.10 (3.85 to 4.36; P<0.001). Attitudes towards screening were less positive in the decision aid group, with 51% of the participants expressing favourable attitudes compared with 65% of participants in the control group (14% difference, 95% confidence interval 5% to 23%; P=0.002). The participation rate for screening was reduced in the decision aid group: completion of faecal occult blood testing was 59% v 75% in the control group (16% difference, 8% to 24%; P=0.001). The decision aid increased the proportion of participants who made an informed choice, from 12% in the control group to 34% in the decision aid group (22% difference, 15% to 29%; P<0.001). More participants in the decision aid group had no decisional conflict about the screening decision compared with the controls (51% v 38%; P=0.02). The groups did not differ for general anxiety or worry about bowel cancer. Conclusions Tailored decision support information can be effective in supporting informed choices and greater involvement in decisions about faecal occult blood testing among adults with low levels of education, without increasing anxiety or worry about developing bowel cancer. Using a decision aid to make an informed choice may, however, lead to lower uptake of screening. Trial registration ClinicalTrials.gov NCT00765869 and Australian New Zealand Clinical Trials Registry 12608000011381.

Physician–patient–companion communication and decision-making: A systematic review of triadic medical consultations

OBJECTIVE To systematically review quantitative and qualitative studies exploring physician-adult patient-adult companion (triadic) communication and/or decision-making within all medical encounters. METHODS Studies were identified via database searches and reference lists. One author assessed eligibility of studies, verified by two co-authors. Data were extracted by one author and cross-checked for accuracy. Two authors assessed the quality of included articles using standardized criteria. RESULTS Of the 8409 titles identified, 52 studies were included. Summary statements and tables were developed for each of five identified themes. Results indicated companions regularly attended consultations, were frequently perceived as helpful, and assumed a variety of roles. However, their involvement often raised challenges. Patients with increased need were more often accompanied. Some companion behaviours were felt to be more helpful (e.g. informational support) and less helpful (e.g. dominating/demanding behaviours), and preferences for involvement varied widely. CONCLUSION Triadic communication in medical encounters can be helpful but challenging. Based on analysis of included studies, preliminary strategies for health professionals are proposed. PRACTICE IMPLICATIONS Preliminary strategies for health professionals include (i) encourage/involve companions, (ii) highlight helpful companion behaviours, (iii) clarify and agree upon role preferences of patient/companions. Future studies should develop and evaluate specific strategies for optimizing triadic consultations.

Attitudes towards HPV testing: a qualitative study of beliefs among Indian, Pakistani, African-Caribbean and white British women in the UK.

This study examined attitudes to human papillomavirus (HPV) testing among a purposively selected sample of women from four ethnic groups: white British, African Caribbean, Pakistani and Indian. The design was qualitative, using focus group discussion to elicit womens attitudes towards HPV testing in the context of cervical cancer prevention. The findings indicate that although some women welcomed the possible introduction of HPV testing, they were not fully aware of the sexually transmitted nature of cervical cancer and expressed anxiety, confusion and stigma about HPV as a sexually transmitted infection. The term ‘wart virus’, often used by medical professionals to describe high-risk HPV to women, appeared to exacerbate stigma and confusion. Testing positive for HPV raised concerns about womens sexual relationships in terms of trust, fidelity, blame and protection, particularly for women in long-term monogamous relationships. Participation in HPV testing also had the potential to communicate messages of distrust, infidelity and promiscuity to womens partners, family and community. Concern about the current lack of available information about HPV was clearly expressed and public education about HPV was seen as necessary for the whole community, not only women. The management of HPV within cervical screening raises important questions about informed participation. Our findings suggest that HPV testing has the potential to cause psychosocial harm to women and their partners and families.

Use of a decision aid including information on overdetection to support informed choice about breast cancer screening: a randomised controlled trial

BACKGROUND Mammography screening can reduce breast cancer mortality. However, most women are unaware that inconsequential disease can also be detected by screening, leading to overdiagnosis and overtreatment. We aimed to investigate whether including information about overdetection of breast cancer in a decision aid would help women aged around 50 years to make an informed choice about breast screening. METHODS We did a community-based, parallel-group, randomised controlled trial in New South Wales, Australia, using a random cohort of women aged 48-50 years. Recruitment to the study was done by telephone; women were eligible if they had not had mammography in the past 2 years and did not have a personal or strong family history of breast cancer. With a computer program, we randomly assigned 879 participants to either the intervention decision aid (comprising evidence-based explanatory and quantitative information on overdetection, breast cancer mortality reduction, and false positives) or a control decision aid (including information on breast cancer mortality reduction and false positives). Participants and interviewers were masked to group assignment. The primary outcome was informed choice (defined as adequate knowledge and consistency between attitudes and screening intentions), which we assessed by telephone interview about 3 weeks after random allocation. The primary outcome was analysed in all women who completed the relevant follow-up interview questions fully. This trial is registered with the Australian New Zealand Clinical Trials Registry, number ACTRN12613001035718. FINDINGS Between January, 2014, and July, 2014, 440 women were allocated to the intervention group and 439 were assigned to the control group. 21 women in the intervention group and 20 controls were lost to follow-up; a further ten women assigned to the intervention and 11 controls did not answer all questions on attitudes. Therefore, 409 women in the intervention group and 408 controls were analysed for the primary outcome. 99 (24%) of 409 women in the intervention group made an informed choice compared with 63 (15%) of 408 in the control group (difference 9%, 95% CI 3-14; p=0·0017). Compared with controls, more women in the intervention group met the threshold for adequate overall knowledge (122/419 [29%] vs 71/419 [17%]; difference 12%, 95% CI 6-18; p<0·0001), fewer women expressed positive attitudes towards screening (282/409 [69%] vs 340/408 [83%]; 14%, 9-20; p<0·0001), and fewer women intended to be screened (308/419 [74%] vs 363/419 [87%]; 13%, 8-19; p<0·0001). When conceptual knowledge alone was considered, 203 (50%) of 409 women in the intervention group made an informed choice compared with 79 (19%) of 408 in the control group (p<0·0001). INTERPRETATION Information on overdetection of breast cancer provided within a decision aid increased the number of women making an informed choice about breast screening. Becoming better informed might mean women are less likely to choose screening. FUNDING Australian National Health and Medical Research Council.

Predictors of attendance in the United Kingdom flexible sigmoidoscopy screening trial

Objective To investigate predictors of attendance in the United Kingdom flexible sigmoidoscopy screening trial. Design Prospective design in which participants completed a postal questionnaire before being sent their invitation for screening. Setting Welwyn Garden City and Leicester, United Kingdom. Participants A total of 2758 patients aged 55 to 64, registered with general practices in the two centres, who (a) expressed interest in having the screening test, (b) completed a postal questionnaire, and (c) were subsequently invited for screening. Main results The attendance rate among questionnaire responders was 76.1%. Multiple logistic regression analysis yielded a final model that included nine independent predictors of attendance. Patients with the following characteristics were more likely to attend: men; home owners; non-smokers; those who had regular check ups at the dentist; those with better subjective health; those who minded less about having medical tests; those who said they would definitely rather than probably take up the offer of sigmoidoscopy screening; and those who perceived less barriers and more benefits to having the test. Conclusions The findings are broadly consistent with previous studies of screening participation, although subjective health emerged as an important predictor in this study. There was no evidence for “reverse targeting”: attenders were not at lower (or higher) risk for colorectal cancer compared with non-attenders. The findings relating to attitudes and beliefs could be used in efforts to improve attendance, for example by developing information leaflets that address barriers to screening. Other findings could be used to target interventions to subgroups that have relatively low rates of screening participation.