[Show abstract][Hide abstract] ABSTRACT: Two human papillomavirus vaccines were licenced in 2006/2007 for cervical cancer prevention. National vaccination programmes for schoolgirls were subsequently introduced in some European countries, North America and Australia. To understand factors influencing vaccine uptake and to inform the development of appropriate UK educational materials, we aimed to synthesise evidence of girls' and parents' information needs, views and preferences regarding HPV vaccination.
Systematic review and mixed method synthesis of qualitative and survey data.
12 electronic databases; bibliographies of included studies 1980 to August 2011.
Two reviewers independently screened papers and appraised study quality. Studies were synthesised collaboratively using framework methods for qualitative data, and survey results integrated where they supported, contrasted or added to the themes identified.
Twenty-eight qualitative studies and 44 surveys were included. Where vaccination was offered, uptake was high. Intention to decline was related to a preference for vaccinating later to avoid appearing to condone early sexual activity, concerns about vaccine safety and low perception of risk of HPV infection. Knowledge was poor and there were many misconceptions; participants tried to assess the potential benefits and harms of vaccination but struggled to interpret limited information about HPV in the context of existing knowledge about sexually transmitted infections and cancer. Conclusion Many girls and their parents have limited understanding to an extent that impinges on their ability to make informed choices about HPV vaccination and could impact on future uptake of cervical screening. This is a considerable challenge to those who design and provide information, but getting the messages right for this programme could help in developing patient information about other HPV related cancers.
[Show abstract][Hide abstract] ABSTRACT: Rationale, aims and objectives: Little is understood about how decision aids achieve their reported effects or their impact on the decision-making process. We aimed to evaluate the quality of decision aids for women choosing surgery for early breast cancer and to examine how their reported effects may reflect the contribution of components suggested by an extended Theory of Planned Behaviour (TPB) and the Common Sense Model of Illness Representations (CSM) to be required for good quality decision-making in this domain.
Method: We undertook a systematic review to examine the components of decision aids that influence decision-making processes for women choosing surgery for early breast cancer. The quality and theoretical underpinnings of the decision aids were appraised and reported outcomes meta-analysed.
Results: Ten decision aids were obtained; 4 had been evaluated in randomised trials. The quality of the decision aids was similar, with limited evidence of theoretical base. Data linking decision aid components, design, use and outcomes to judge the effects on the decision-making process were inconsistent. Two trials suggested evidence of a reduction in Decision Conflict scores (SMD = -0.35, 95% CI -0.57 to -0.12, p = 0.002). Improvements in knowledge (4 trials) and trends towards breast conservation surgery (3 trials) were not statistically significant.
Conclusions: A greater understanding of how decision aids impact on the decision-making process is needed if we are to design improved interventions that are effective on the core aspects of decision-making in this domain.
[Show abstract][Hide abstract] ABSTRACT: Women at high risk of familial ovarian cancer face a potentially difficult risk management choice between unproven ovarian cancer screening (OCS) and bilateral salpingo-oophorectomy (BSO). It is not fully understood why women who initially opt for OCS may later undergo BSO, nor what the impact of this may be. This study explored the catalysts for surgery and reactions to discontinuing OCS. Semi-structured interviews were completed with 21 women who had undergone surgery having initially chosen OCS to explore their screening experiences, reasons for and feelings about surgery, and reactions to discontinuing OCS. The invasive nature and frequency of OCS were not by themselves a catalyst for surgery. A number of catalysts, including abnormal OCS test results, and secondary considerations, such as age-related factors, were found to prompt surgery. The emotional impact of discontinuing OCS following BSO varied between relief, acceptance, and loss of reassurance. OCS appears to be an acceptable risk management strategy under certain circumstances, but varying factors can prompt the decision to opt instead for BSO. The complexity of this management change decision should not be underestimated and needs to be taken into account by clinicians assisting women making choices. These findings highlight the importance of the timing of decision-making about BSO and that risk management options need routine reconsideration, through clinical discussions, information and support.
[Show abstract][Hide abstract] ABSTRACT: Objectives:
Ovarian cancer screening for women at increased genetic risk in the UK involves 4-monthly CA125 tests and annual ultrasound, with further tests prompted by an abnormal result. The study evaluated the longer-term psychological and behavioural effects of frequent ovarian screening.
Women completed T1 questionnaires before their first routine 4-monthly CA125 test, and T2 follow-up questionnaires one week after their result. Women with abnormal results completed a further questionnaire one week after return to routine screening (T3 primary end-point). T4 questionnaires were sent at nine months. Measures included cancer distress, general anxiety/depression, reassurance, and withdrawal from screening.
A total 1999 (62%) of 3224 women completed T1 questionnaires. T2 questionnaires were completed by 1384/1609 participants (86%): 1217 (89%) with normal results and 167/242 (69%) with abnormal results. T3 questionnaires were completed by 141/163 (87%) women, with 912/1173 (78%) completing T4 questionnaires. Analysis of covariance indicated that, compared to women with normal results, women with abnormal results reported moderate cancer distress (F = 27.47, p ≤ .001, η(2) = 0.02) one week after their abnormal result and were significantly more likely to withdraw from screening (OR = 4.38, p ≤ .001). These effects were not apparent at T3 or T4. The effect of screening result on general anxiety/depression or overall reassurance was not significant.
Women participating in frequent ovarian screening who are recalled for an abnormal result may experience transient cancer-specific distress, which may prompt reconsideration of risk management options. Health professionals and policy makers may be reassured that frequent familial ovarian screening does not cause sustained psychological harm.
Full-text · Article · Aug 2012 · Gynecologic Oncology
[Show abstract][Hide abstract] ABSTRACT: A new protocol for human papillomavirus (HPV) testing within the UK cervical screening programme commenced in April 2011, creating new patient experiences. This is the first review to synthesise a substantial body of international evidence of women's information needs, views and preferences regarding HPV testing. We aimed to inform the development of educational materials to promote informed choice, reduce anxiety and improve disease control.
We searched 12 bibliographic databases. Two reviewers independently screened papers and assessed study quality; disagreements were resolved by discussion. Results were extracted verbatim and authors' findings treated as primary data. Studies were synthesised collaboratively using framework methods.
We synthesised findings from 17 studies. Women had overwhelmingly negative concerns; an HPV diagnosis was daunting, had associated problems of disclosure of a sexually transmitted infection (STI), impacted on relationships and provoked fear of stigmatisation. Nevertheless, many thought HPV testing could be a preferable alternative to repeat cytology. Knowledge was poor; women struggled to interpret limited information in the context of existing knowledge about STIs and cervical cancer.
Women are likely to be poorly informed, have limited understanding and many unanswered questions. This could increase anxiety and reduce ability to make informed choices, presenting a substantial challenge for those who design and provide information.
Full-text · Article · Jun 2012 · British Journal of Cancer
[Show abstract][Hide abstract] ABSTRACT: To undertake a quantitative evaluation of a theory-based, interactive online decision aid (BresDex) to support women choosing surgery for early breast cancer (Stage I and II), based on observations of its use in practice.
Observational cohort study. Website log-files collected data on the use of BresDex. Online questionnaires assessed knowledge about breast cancer and treatment options, degree to which women were deliberating about their options, and surgery intentions, pre- and post-BresDex.
Readiness to make a decision significantly increased after using BresDex (p<.001), although there was no significant improvement in knowledge. Participants that were 'less ready' to make a decision before using BresDex, spent a longer time using BresDex (p<.05). Significant associations between surgery intentions and choices were observed (p<.001), with the majority of participants going on to have BCS. Greater length of time spent on BresDex was associated with stronger intentions to have BCS (p<.05).
The use of BresDex appears to facilitate readiness to make a decision for surgery, helping to strengthen surgery intentions.
BresDex may prove a useful adjunct to the support provided by the clinical team for women facing surgery for early breast cancer.
[Show abstract][Hide abstract] ABSTRACT: The success and cost-effectiveness of bowel cancer screening depends on achieving and maintaining high screening uptake rates. The involvement of GPs in screening has been found to improve patient compliance. Therefore, the endorsement of screening by GPs may increase uptake rates amongst non-responders.
A two-armed randomised controlled trial will evaluate the effectiveness of a GP endorsed reminder in improving patient participation in the NHS Bowel Cancer Screening Programme (NHSBCSP). Up to 30 general practices in the West Midlands with a screening uptake rate of less than 50% will be recruited and patients identified from the patient lists of these practices. Eligible patients will be those aged 60 to 74, who have previously been invited to participate in bowel screening but who have been recorded by the Midlands and North West Bowel Cancer Screening Hub as non-responders. Approximately 4,380 people will be randomised in equal numbers to either the intervention (GP letter and duplicate FOBt kit) or control (no additional contact) arms of the trial. The primary outcome measure will be the difference in the uptake rate of FOBt screening for bowel cancer between the intervention and control groups at 13 weeks after the GP endorsed reminder and duplicate FOBt kit are sent. Secondary outcome measures will be subgroup analyses of uptake according to gender, age and deprivation quartile, and the validation of methods for collecting GP, NHSBCSP and patient costs associated with the intervention. Qualitative work (30 to 40 semi-structured interviews) will be undertaken with individuals in the intervention arm who return a FOBt kit, to investigate the relative importance of the duplicate FOBt kit, reminder to participate, and GP endorsement of that reminder in contributing to individuals' decisions to participate in screening.
Implementing feasible, acceptable and cost-effective strategies to improve screening uptake amongst non-responders to invitations to participate is fundamentally important for the success of screening programmes. If this feasibility study demonstrates a significant increase in uptake of FOBt screening in individuals receiving the intervention, a definitive, appropriately powered future trial will be designed.
[Show abstract][Hide abstract] ABSTRACT: A prospective psychological evaluation study of familial ovarian cancer screening (PsyFOCS) is underway in partnership with the UK Familial Ovarian Cancer Screening Study (UK FOCSS Phase 2). One of the aims of PsyFOCS is to examine factors associated with withdrawal from the UK FOCSS prior to the onset of 4-monthly screening.
1999 of 3224 women completed a baseline questionnaire. 110 (5.5%) women withdrew from screening prior to their first routine Phase 2 screen, of which 73 (66.4% of withdrawals) had withdrawn because they had undergone removal of their ovaries and fallopian tubes (withdrawn group). The comparison group consisted of 1868 women who remained on screening. The baseline questionnaire included measures of cancer-specific distress, anxiety, depression and illness perceptions.
Logistic regression analysis indicated that having had prior annual (Phase 1) screening (OR=13.34, p<.01), past experience of further tests (OR=2.37, p<.01) and greater cancer-specific distress (OR=1.38, p<.01) were associated with withdrawal for surgery. Belief in ageing as a cause of ovarian cancer was also associated with withdrawal (OR=1.32, p=.05).
These cross-sectional data suggest that withdrawal from familial ovarian cancer screening may be influenced by both clinical and psychological factors. These may reflect women's experience of the drawbacks of screening and increased concern about ovarian cancer risk, as well as having opportunities to consider surgery as an alternative risk management strategy whilst using screening as an interim measure.
Full-text · Article · Jan 2012 · Gynecologic Oncology
[Show abstract][Hide abstract] ABSTRACT: A systematic review of the literature was conducted to characterise patients' own experience of colonoscopy in the screening context.
A search strategy was applied in MEDLINE, EMBASE and PSYCHinfo (1996-2009). Thematic analysis and narrative summary techniques were used.
Fifty-six studies met eligibility criteria and were included in the analysis. Seven studies examined patients' views after having colonoscopy. Forty-seven studies addressed patient-reported barriers to an anticipated primary colonoscopy. Most patients perceived the laxative bowel preparation to be the most burdensome part of colonoscopy. Other reported difficulties included anxiety, anticipation of pain, feelings of embarrassment and vulnerability. Inadequate knowledge and fear of finding cancer were identified as obstacles to the uptake of screening colonoscopy. Physician endorsement, having a family history, knowing someone with cancer, and perceived accuracy of the test were incentives to having a colonoscopy. Two studies focused on colonoscopy after faecal occult blood screening. Similar procedural, personal, and practical concerns were reported.
Bowel preparation, lack of awareness of the importance of screening, and feelings of vulnerability in women are all significant barriers to screening colonoscopy.
Patient reported obstacles and barriers to screening colonoscopy needs to be addressed to improve adherence.
No preview · Article · Jun 2011 · Patient Education and Counseling
[Show abstract][Hide abstract] ABSTRACT: Design and undertake usability and field-testing evaluation of a theory-guided decision aid (BresDex) in supporting women choosing surgery for early breast cancer.
An extended Theory of Planned Behavior (TPB) and the Common Sense Model of Illness Representations (CSM) guided the design of BresDex. BresDex was evaluated and refined across 3 cycles by interviewing 6 women without personal history of breast cancer, 8 women with personal history of breast cancer who had completed treatment and 11 women newly diagnosed with breast cancer. Participants were interviewed for views on content, presentation (usability) and perceived usefulness towards deciding on treatment (utility). Framework analysis was used, guided by the extended TPB and the CSM.
BresDex was positively received in content and presentation (usability). It appeared an effective support to decision-making and useful source for further information, particularly in clarifying attitudes, social norms and perceived behavioral control, and presenting consequences of decisions (utility).
This study illustrates the potential benefit of the extended TPB and CSM in designing a decision aid to support women choosing breast cancer surgery.
BresDex could provide decision-making support and serve as an additional source of information, to complement the care received from the clinical team.
Full-text · Article · May 2011 · Patient Education and Counseling
[Show abstract][Hide abstract] ABSTRACT: The UK Human Papillomavirus (HPV) vaccination programme was introduced in 2008 for girls aged 12-13. The vaccine offers protection against HPV types 16 and 18, which together cause about 70% of cervical cancers. Vaccinated girls will receive future invitations to the NHS Cervical Screening Programme, to prevent cancers associated with HPV types not included in the vaccine, and in case of prior infection with HPV 16 or 18. Little is known about parents' and girls' understandings of the protection offered by the vaccine, or the need for future screening.
Qualitative interviews with twenty-six parents, and nine girls aged 12-13 who were offered HPV vaccination through a Primary Care Trust (PCT) in the South-east of England, UK.
Thirty-nine schools, and four general practices.
Uncertainty about the level of protection offered by the HPV vaccine was evident among parents, and to a lesser extent among vaccination-aged girls. There was a lack of understanding among parents and girls that cervical screening would be required irrespective of vaccination status; some parental decisions to accept the vaccine were made on the misunderstanding that vaccination provided complete protection against cervical cancer.
Sufficient awareness of the issues related to screening is necessary for informed decision-making about whether or not to accept the HPV vaccine. Clearer information is needed concerning the incomplete protection offered by the vaccine, and that cervical screening will still be required. Future invitations for cervical screening should stress the necessity to attend regardless of HPV vaccination status, to ensure that high levels of prevention of cervical cancer through screening are maintained.
Full-text · Article · May 2011 · Journal of Medical Screening
[Show abstract][Hide abstract] ABSTRACT: There is interest in interventions that provide support for patients facing challenging decisions, such as the choice between mastectomy and breast conservation surgery for breast cancer. However, it is difficult to implement these interventions. One potential source of resistance is the attitudes of clinicians.
To examine specialist breast clinicians' opinions about the provision of decision support interventions (DesIs) for patients.
As part of the development of a web-based DesI (BresDex), semi-structured interviews were conducted with specialist clinicians [breast surgeons, breast care nurses (BCNs) and oncologists] from four breast units in a UK region, and speciality national opinion leaders. Interviews were recorded, transcribed and analysed using the Framework approach.
A majority of the 24 clinicians interviewed did not have a working knowledge of DesIs and were ambivalent or sceptical. Many expressed conflicting opinions: they noted the potential benefits, but at the same time expressed reservations about information overlap, overload and about content that they considered inappropriate. Many wanted access to DesIs to be always under clinical supervision. In particular, they were uncertain as regards how DeSIs could be tailored to individual patients' needs and also accommodate clinical practice variation. BCNs were particularly concerned that DesIs might induce patient anxiety and replace their role.
The concept of providing interventions to support patients in decision-making tasks generated concern, defensiveness and scepticism. These attitudes will be a significant barrier. Implementation efforts will need to recognize and address these issues if these interventions are to become embedded in clinical practice.
Full-text · Article · Oct 2010 · Health expectations: an international journal of public participation in health care and health policy
[Show abstract][Hide abstract] ABSTRACT: Studies are underway to establish the clinical effectiveness of annual mammographic screening in women younger than 50 years with a family history of breast cancer. This study investigated both the positive and negative psychological effects of screening on these women.
Women who received an immediate all-clear result after mammography (n = 1,174) and women who were recalled for additional tests before receiving an all-clear result (false positive; n = 112) completed questionnaires: 1 month before mammography, and 1 and 6 months after receiving final results. The questionnaires included measures of cancer worry, psychological consequences, and perceived benefits of breast screening.
Women who received an immediate all-clear result experienced a decrease in cancer worry and negative psychological consequences immediately after the result, whereas women who were recalled for additional tests did not. By 6 months this cancer-specific distress had reduced significantly in both groups. Changes in levels of distress were significantly different between the two groups, but in absolute terms the differences were not large. Recalled women reported significantly greater positive psychological consequences of screening immediately after the result, and were also more positive about the benefits of screening compared with women who received an immediate all-clear result.
For women receiving an immediate all-clear result, participating in annual mammographic screening is psychologically beneficial. Furthermore, women who are recalled for additional tests do not appear to be harmed by screening: these women's positive views about mammography suggest that they view any distress caused by recall as an acceptable part of screening.
Full-text · Article · Oct 2007 · Journal of Clinical Oncology
[Show abstract][Hide abstract] ABSTRACT: Current UK policy recommends informed decision making for prostate-specific antigen (PSA) testing. The process by which men decide to be tested warrants further investigation.
To determine the important influences on men's decision to have a PSA test.
Semi-structured interviews with 20 men who had raised the issue of testing for prostate cancer with their GP and undergone the PSA test.
Men wanted to be tested primarily because they believed in the benefits of early diagnosis. Triggers for consulting the GP were the personal experiences of friends with prostate cancer, a desire to be proactive about health, media reports, a family history or ongoing urinary symptoms. Before consulting the GP, men's awareness was largely based on personal accounts and media stories and did not include much familiarity with the potential limitations of testing. Many had decided they wanted to be tested by the time they consulted their GP and this decision remained largely unaffected by the consultation. Men varied in the value they placed on receiving information about the benefits and limitations of PSA testing from their GP.
Men who consult their GP about testing are often already committed to having the test. When information about the benefits and limitations of PSA testing is provided, at that stage it may be too late for it to play a part in their decision. Making balanced information available to men in the community may be a more effective way to promote informed decision making and to facilitate more useful discussions with the GP.
[Show abstract][Hide abstract] ABSTRACT: The National Health Service Prostate Cancer Risk Management Programme (PCRMP) has recommended that screening for prostate cancer is available for asymptomatic men, on the understanding that they have been provided with full and balanced information about the advantages and limitations of the prostate-specific antigen (PSA) test. Guidance has been distributed to all GPs in England and Wales to assist in the provision of information to men. This study aimed to elicit GPs' accounts of their discussions with asymptomatic men who consult with concerns about prostate cancer in order to identify the degree to which the PCRMP guidance was reflected in these consultations.
Qualitative interview study. Semi-structured telephone interviews with 21 GPs from 18 GP practices in Oxfordshire.
All GPs reported undertaking some discussion with asymptomatic men about the PSA test. They described focussing most of the discussion on the false-positive and false-negative rates of the test, and the risks associated with a prostate biopsy. They reported less discussion of the potential for diagnosing indolent cancers, the dilemmas regarding treatment options for localised prostate cancer and the potential benefits of testing. Considerable variation existed between GPs in their accounts of the degree of detail given, and GP's presentation of information appeared to be affected by their personal views of the PSA test.
The GPs in this study appear to recognise the importance of discussions regarding PSA testing; however, a full and balanced picture of the associated advantages and limitations does not seem to be consistently conveyed. Factors specific to PSA testing which appeared to have an impact on the GPs' discussions were the GP's personal opinions of the PSA test, and the need to counter men's primarily positive views of the benefits of PSA testing. Awareness of the impact of their views on the consultations may help GPs give men a more balanced presentation of the benefits and limitations of the PSA test.
Full-text · Article · Feb 2007 · BMC Family Practice