What Australian women want and when they want it: cervical screening testing preferences,decision‐making styles and information needs

Background New testing technologies and human papillomavirus (HPV) vaccines have recently brought changes to cervical cancer screening. In 2006, the Australian government also changed the protocol for managing abnormal Pap smears. Australian women’s attitudes and preferences to these changes are largely unknown. Quantitative data on information needs and community attitudes to informed decision making in screening in Australia are also limited. Objective This national study measures women’s preferences for testing and management of abnormal screening results, preferred decision‐making styles and information needs for cervical cancer screening. Design A randomly selected sample of Australian women aged 18–70 participated in a structured telephone questionnaire, exploring testing preferences, information and decision‐making needs. Results A total of 1279, of 1571 eligible women, participated in the study with an overall response rate of 81.4%. Half of the women (n = 637) preferred having their Pap smears at least annually, and 85% wanted concurrent HPV testing. A large proportion of women preferred to be involved in decision making for both routine Pap smears (87%) and follow‐up for abnormal results (89%). The majority of women wanted information on screening risks (70%) and benefits (77%); of these 81 (85%) wanted this information before screening. However, 63% of women only wanted information about follow‐up examinations if they had an abnormal Pap test result. Conclusion Australian women want to be involved in decision making for cervical cancer screening and require information on the risks and benefits of Pap testing prior to undergoing any screening.     

Factors associated with the difference in score between women's and doctors' decisional conflict about hormone therapy: a multilevel regression analysis

Objective: To explore factors associated with the difference in score between women's and doctors’ decisional conflict about hormone therapy (HT). Design: Secondary analysis. Setting and participants: family doctors were randomized to prepare women for counselling about HT using either a decision aid or a pamphlet. Main variables studied: After each counselling session, decisional conflict was assessed in women and doctors using the Decisional Conflict Scale (DCS) and the Provider Decision Process Assessment Instrument (PDPAI), respectively. The difference in score between the DCS and PDPAI was computed and entered as the dependent variable in a multilevel regression analysis. Main outcome results: A total of 40 doctors and 167 women were included in the analysis. The intra‐doctor correlation coefficient was 0.25. Factors associated with women experiencing higher decisional conflict than their doctor were: age of doctor >45 years, women who were undecided about the best choice after the counselling session, women with a university degree and women who said that their doctor usually does not give them control over treatment decision. Factors associated with doctors experiencing more decisional conflict than women were: doctors who were undecided about the quality of the decision, length of visit <30 min and women who thought that the decision was shared with their doctor. Conclusion: In order to reduce the disparities between women's and doctors’ decisional conflict about HT, interventions aimed at raising awareness of doctors about shared decision‐making should be encouraged.     

Patients' regrets after participating in a randomized controlled trials depended on their involvement in the decision making

ObjectiveTo identify the factors associated with long-term regrets expressed a posteriori by randomized controlled trial (RCT) participants questioned about their decision to participate in an RCT.Study Design and SettingParticipants were questioned 6 years on average after their inclusion in a breast cancer adjuvant therapy RCT. Among 115 women from 21 centers, 93 (81%) answered a self-administered questionnaire based on the Decision Regret Scale (DRS).ResultsMean DRS score was 16.8 (standard deviation = 15.9); 43.0% of participants expressed mild regret, and 25.8% expressed moderate to strong regret. A quarter of the women (25.6%) said that the decision was taken by the doctor alone, and 13.5% said it was not consistent with their own wishes.In the multivariate ordinal regression analysis, an involuntarily passive role in decision making was found to be associated with greater regret (cumulative proportional odds ratio = 7.3, 95% confidence interval = 2.0–27.6), regardless of age, and being allotted or not to the standard treatment in the RCT.ConclusionWhether patients’ regret depended on their level of participation in the decision making or vice versa could not be determined in this cross-sectional survey, but efforts should be made to ensure that patients’ participation in trials is always based on an active personal decision.     

Communicating health decisions: an analysis of messages posted to online prostate cancer forums

Background Experiential websites such as message forums and blogs allow Prostate Cancer (PCa) patients to communicate their health decisions to peers. The issues surrounding this form of indirect involvement in public health are little understood. Objective This paper explores the types of decision‐making processes that people are exposed to on PCa online message boards. The kinds of treatment choices patients are making and the reports of their decision‐making processes to peers through an online environment are examined in the context of the Heuristic Systematic Model. Method Messages about treatment decision making were collected from four PCa websites. In total, 137 messages were selected from blogs and online forums and their decision‐making processes coded. Results Men looking online for information about treatment options for PCa are exposed to a range of decision‐making processes. Just under half (49.6%) of the messages reported non‐systematic decision processes, with deferral to the doctor and proof of cancer removal being the most common. For systematic processing (36.5%), messages most commonly considered treatment outcomes and side‐effects. Processes did not vary between the blogs and online forums. Discussion and conclusion Compared to previous studies far fewer messages reported non‐systematic decision processes and only a small number of messages reflected lay beliefs or misbeliefs about PCa treatment. Implications for men and their clinicians of seeking health information online are discussed.     

Decision-making role preferences and information needs: a comparison of colorectal and breast cancer

Objective  An exploratory study has been carried out to examine decision-making role preferences and information needs for a sample of people with colorectal cancer ( n =48). The work replicated a larger study carried out for women with breast cancer ( n =150), and this paper compares and contrasts findings for both disease groups.
Design  A cross-sectional design was employed, involving structured interviews. The main variables investigated were decision-making preference (using a decisional role preference card sort), perceived decisional role and information need (using an information needs questionnaire).
Results  The majority (78%) of the colorectal cancer patients preferred to play a passive role in decision making, in contrast to 52% of women with breast cancer in previous work. Eighty per cent of the colorectal sample and 61% of the women with breast cancer perceived that the doctor had made treatment decisions. Priority information needs for both groups related to cure, spread of disease and treatment options.
Conclusions  The two most striking findings from the comparison between the two disease groups relate to the differences in decision-making role preferences and the similarities in information needs. The process of involving people with colorectal cancer in treatment decision making warrants further investigation. The similarity in information needs of the two disease groups has implications for health care professionals providing information to people with cancer.     

Sharing decisions in cancer care

Previous studies have demonstrated that the majority of cancer patients fail to achieve their desired level of participation during treatment decision making. However, it is unclear whether this failure affects patient well-being and satisfaction. Furthermore, whilst shared decision making is currently espoused as the preferred model for doctor patient relations, little empirical evidence exists showing it has beneficial effects for patients. We aimed to evaluate the impact of shared decision making and the achievement of preferred role on patient anxiety, recall of information, and satisfaction. Patients with cancer indicated their preferred level of participation in decision making and preferences for information and emotional support prior to their initial consultation with an oncologist. Anxiety was assessed prior to and immediately after the consultation and recall seven days after the consultation. Anxiety was reassessed at two-weeks post-consultation at which time patients also reported their satisfaction with the consultation and perceived role of participation in treatment decision making. Satisfaction with the information and emotional support received was also evaluated. Of the 233 patients available for analysis, a match between preferred and perceived roles was found for over one-third of patients (34%), with 29% more active and 37% less involved in decision making than preferred. Multivariate analyses demonstrated that role mismatch significantly predicted changes in anxiety levels from pre to immediate postconsultation (p = 0.03). However, irrespective of preferred role in decision making, perceived role, but not role mismatch, significantly and independently predicted satisfaction with both the consultation (p = 0.0005) and the amount of information and emotional support received from the doctor (p = 0.004). Patients who reported a shared role in decision making were most satisfied with the consultation and with the information about treatment and emotional support received. Those who reported that either themselves or the doctor exclusively made the decision were least satisfied. These findings underscore the pre-eminence of the shared decision making model and suggest that encouraging participation may be the safest standard approach. Doctor - as well as patient - based interventions are required to promote patient participation.     

Are patients' decision‐making preferences being met?

Objective To investigate the information and decision‐making expectations of general practice patients during real life consultations. Design Post‐consultation, quantitative patient preference and enablement questionnaire. Setting and participants Patients attending for routine appointments in general practice surgeries in Oxfordshire, UK. Results Thirteen Oxfordshire general practitioners (GPs) volunteered to take part and a total of 171 patients completed and returned the questionnaire. Between a quarter and one‐third of patients reported receiving less information than they desired, particularly in relation to the risks and benefits of medical treatments. Patients who preferred the doctor to make decisions for them (35%), were more likely to have their preferences met (64%) compared with patients wishing to share decisions (47%) or make their own (18%) who were less likely to achieve this role (52 and 41%, respectively). However, it could not be demonstrated unequivocally that these differences were statistically significant. In total, 61% of patients perceived that they achieved their preferred decision‐making role. No significant differences were found in post‐consultation enablement scores between any of the decision preference groups. Patients' assessments indicated that some doctors were more successful at achieving congruence than others. Conclusion The decision‐making preferences of general practice patients tend to vary. However, there was a substantial mismatch between the stated preferences of patients for the role they wanted to have in decision‐making and what they felt actually took place in their consultation. Therefore, it remains a challenge for doctors to match their consultation style to the decision‐making preferences of individual patients.     

Informed decision making before initiating screening mammography: does it occur and does it make a difference?

Objective Informed decision making regarding screening mammography is recommended for women under age 50. To what extent it occurs in clinical settings is unclear. Methods Using a mailed instrument, we surveyed women aged 40–44 prior to their first screening mammogram. All women were members of a large health maintenance organization and received care at a large medical practice in the Greater Boston area. The survey measured informed decision making, decisional conflict, satisfaction, and screening mammography knowledge and intentions to undergo screening. Results Ninety‐six women responded to the survey (response rate 47%). Overall, women reported limited informed decision making regarding screening mammography, both with respect to information exchange and involvement in the decision process. Less than half (47%) reported discussing the benefits of screening; 23% the uncertainties; and only 7% the harms. About 30% reported discussing the nature of the decision or clinical issue; and 29% reported their provider elicited their preferred role in the decision; 38% their preferences; and 24% their understanding of the information. Women who were uninformed had higher decisional conflict (2.37 vs. 1.83, P = 0.005) about screening mammography and were more likely to be dissatisfied with the information and involvement. Women’s screening mammography knowledge was limited in most areas; however being presented with information did not diminish their intentions to undergo screening. Conclusion Informed decision making before initiating screening mammography is limited in this setting. There appears to be little indication that information about the benefits and harms decreases women’s intentions to undergo screening. Methods to communicate information to women before initiating screening mammography are needed.     

A survey of the decision-making needs of Canadians faced with complex health decisions

Objective To describe the decision‐making needs of Canadians when faced with ‘complex’ health decisions characterized by balancing advantages against disadvantages. Although a national report emphasized that public confidence in the health‐care system depends on support for personal knowledge and decision‐making, there has been no systematic investigation of the Canadian population's decision‐making needs. Design Cross‐sectional telephone survey using random digit dialling. Participants National sample of 635 adults over 18 years of age, living in Canada. Results Forty‐two percentage of eligible contacts participated. Sixty‐five percent of contacts reported making ‘complex’ health decisions, commonly about medical or surgical treatments or birth control, and more commonly by women and by married/separated individuals. Most respondents took an active role in their decisions, often sharing the process with their partner or family. Being younger was associated with a more independent role. Physicians were more often involved in the decisions of respondents with less education. Fifty‐nine percent of respondents experienced decisional conflict; more conflict was seen with those who were female and feeling uninformed about options, pressured to select one particular option, and unready or unskilled in decision‐making. Less decisional conflict was seen in those who reported birth control decisions and in those who were 70 years and older. Participants used several strategies when deliberating about choices including: information gathering, clarifying their values, and seeking support and information from others. Personal counselling and printed information materials were commonly preferred methods of learning about options. ‘Essential’ criteria for judging satisfactory decision‐making included: having sufficient knowledge about the options, outcomes, and probabilities; being clear about values; selecting and implementing a choice that agrees with personal values; and expressing satisfaction with the choice. Conclusions Canadians, particularly women, face difficult decisions and need support and information from credible sources.     

Survey Assessment of Continuation of and Satisfaction with Pharmacological Treatment for Urinary Incontinence

Purpose:  To evaluate treatment satisfaction and compliance with pharmacologic therapy in urinary incontinence patients.
Materials and Methods:  An online survey was returned by 1447 individuals from a nationwide panel of adults who had previously reported treatment for incontinence symptoms and agreed to participate in survey research. Data on demographics, incontinence severity, treatment compliance, and satisfaction were obtained. Logistic regression was used to estimate crude and adjusted odds ratios (ORs) and 95% confidence intervals (CIs) for characteristics associated with pharmacologic treatment dissatisfaction and discontinuation.
Results:  The sample was predominantly female (87%) and white (93%) with a mean age of 56 years. On average, patients urinated 10 times/day and experienced 16 wetting accidents in the week preceding survey. Overall, 25% reported being somewhat or very dissatisfied with treatment. Those who reported a severe effect of incontinence on their lives were most likely to be dissatisfied (OR = 2.82, 95% CI = 1.89–4.23). Discontinuation of drug treatment was reported by 45% of study subjects, with major reasons being poor efficacy (in 41.3% of discontinuations), side effects (22.4%), and cost (18.7%). Predictors for discontinuation included young age (OR = 1.8, 95% CI = 1.2–2.8), experiencing symptoms for 10 or more years (OR = 1.5, 95% CI = 1.1–2.0), and experiencing more than 16 wetting accidents in the last week (OR = 1.6, 95% CI = 1.3–2.1).
Conclusions:  This online survey of self-selected incontinence patients indicated that almost half of those who have received drug treatment for incontinence had discontinued primarily because of lack of efficacy, side effects, and cost concerns. Our findings suggest a substantial degree of unmet need from current therapy among those with incontinence.     

Is advice incompatible with autonomous informed choice? Women’s perceptions of advice in the context of antenatal screening: a qualitative study

Background Patient autonomy in antenatal screening is a high priority for policy developers in many countries. Objective This paper presents women’s understandings of how health professionals should facilitate informed screening choices with an emphasis on their understandings of autonomy and advice. Design, setting and participants The study was carried out in 2009 in the UK, using a qualitative approach. Ninety‐eight participants of African, British White, Caribbean, Chinese and Pakistani origin had semi‐structured interviews, which were analysed using framework analysis. Results Four themes were identified during the analysis: ‘Meanings of advice in antenatal screening: the advice continuum’, ‘Recognition of the role of health professionals in decision making’, ‘Understandings of advice in the context of autonomous decision making’ and ‘Reasons given for wanting advice’. Women said they valued advice from health professionals to make decisions about antenatal screening, but their understandings of ‘advice’ ranged from information giving only to direction about screening choices. Conclusion Many women wanted health professionals to support the process of making informed choices by engaging in discussion and did not see advice as incompatible with making autonomous choices. However, some women wanted direction about whether to have a screening test or not, something which policy and guidelines explicitly prohibit. This may cause an ethical dilemma for health professionals who are required to both support women’s preference for care and adhere to a policy of non‐directiveness. Further clarification is needed on how health professionals should support the process of making informed choices when women ask for clear direction on screening choices.     

A matter of trust – patient's views on decision-making in colorectal cancer

Objectives To determine which aspects of the treatment decision process, therapy and outcomes are most important to patients with colorectal cancer (CRC). Design Cross‐sectional survey. Participants A total of 102 men and 73 women who had completed primary treatment for CRC in two teaching hospitals in Central Sydney, Australia. Main outcomes measures Patient's rating of the importance of the decision‐making aspects and outcomes of treatment for CRC. Results Trust in their surgeon and confidence of specialty training are of paramount importance to CRC patients. Patients also have a strong desire to get on with treatment quickly and rate the risk of disease recurrence and quality of life as being very important in their treatment decisions. Gender, age and whether the patient had undergone adjuvant radiotherapy were all significant predictors of preferred mode of treatment decision‐making. Fifty‐eight per cent of women preferred a shared decision‐making role compared with 36% of men, whilst older patients and those who had undergone adjuvant radiotherapy were significantly more likely to prefer that their surgeon decide upon treatment when compared with younger patients and respondents who have not had radiotherapy. Conclusions Regardless of whether a patient prefers an active or more passive role in decision‐making, having a surgeon explain treatment options in a clear, unhurried and open manner is vital to how patients feel about their treatment. Whilst acknowledging that individual patients will have different needs for information and preferences for treatment, there are several factors amongst many in the process of decision‐making which are considered very important by patients with CRC. A surgeon who adopts a consultation style that is open and informative, that offers patients the chance to participate in the process of decision‐making and clearly explain treatment options and outcomes will engender trust with their patient.     

The influence of communication and information sources upon decision‐making around complementary and alternative medicine use for back pain among Australian women aged 60–65 years

This study examined factors influencing decision‐making on complementary and alternative medicine (CAM) use for back pain and back pain sufferers' communication about CAM use. A cross‐sectional postal survey was conducted in 2011/2012 as a sub‐study of the Australian Longitudinal Study on Women's Health (ALSWH). The sample contained 1620 women from the 1945–1951 cohort of the ALSWH, aged 60–65 years who were eligible for the sub‐study, as they had experienced back pain during 12 months prior to the survey. Of these, 1310 (80.9%) returned completed questionnaires. A significant proportion of women consulted a CAM practitioner (76%, n = 1001) and/or had self‐prescribed CAM treatment (75%, n = 985). Of the women who used CAM for their back pain, 20% consulted their general practitioner (GP) prior to using CAM and 34% always informed their GP following CAM use. Forty‐three per cent of the women were influenced by their doctors, 39% by friends/colleagues, 36% by family/relatives, 33% by their partner, 30% by a CAM practitioner, 20% by a pharmacist, 16% by a book/magazine, 11% by mass media, 10% by an allied health worker and 6% by the Internet. Our results show that information sources used by women for their decision‐making on CAM use differed according to the symptoms. While non‐professional information sources (e.g. family/relatives) positively influenced women in their decision to use CAM for a range of back pain‐related symptoms (e.g. headaches/migraines), doctors and allied health workers (e.g. nurses) negatively influenced women in their decision to consult a CAM practitioner for a range of back pain‐related symptoms (e.g. headaches/migraines, neck pain). Women seek information from a wide range of professional and non‐professional sources with regard to their decision‐making around CAM use for back pain. Back pain care providers need to ensure effective communication with their back pain patients regarding safe, effective and co‐ordinated back pain care options.     

Development and evaluation of a decision aid for patients considering first-line chemotherapy for metastatic breast cancer

Objective Treatment decisions in advanced breast cancer are complex, with enhanced quality of life and survival among important treatment goals. Patients with metastatic breast cancer face the decision of whether or not to have chemotherapy, and many wish to be involved in this decision. We report the development and evaluation of a decision aid (DA) designed to assist patients facing this treatment decision. Design and sample Women with metastatic breast cancer (n = 17) and medical oncologists in Australia and Canada (n = 7) were invited to evaluate the DA. Intervention A DA was developed for patients with hormone‐resistant metastatic breast cancer considering chemotherapy. The DA presented options of supportive care, with or without chemotherapy. Potential benefits and side effects of different chemotherapy regimens, and evidence‐based prognostic estimates were described, and a values clarification exercise included. Main outcome measures Patient questionnaires evaluating information and decision involvement preferences, attitudes toward the DA and oncologist feedback regarding attitudes toward the DA. Results Seventeen patients participated; fifteen desired as much information about their illness as possible; sixteen wished to be actively involved in the decision‐making process. The majority rated the DA as highly acceptable, clear and informative, and would recommend it to others facing this treatment decision. Conclusion This is the first DA for patients with advanced metastatic breast cancer considering chemotherapy. A randomized trial is underway to evaluate its role in clinical decision‐making.     

Prescription medicines: decision‐making preferences of patients who receive different levels of public subsidy

Objective To compare the relative importance of medicine attributes and decision‐making preferences of patients with higher or lower levels of insurance coverage in a publicly funded health care system. Design and setting Cross‐sectional telephone survey of randomly selected regular medicine users aged ≥18 years in the Hunter Valley, NSW, Australia. Main variables studied Questions about 27 medicine attributes and active involvement in decisions to start a new medicine. Results After adjustment, there were few differences between the 408 concession card holders (high insurance) and 410 general beneficiaries (low insurance) in their assessment of the importance of medicine attributes. For both groups, the explanation of treatment options, establishing the need for the medicine, and medicine efficacy and safety were the most important considerations. Medicine costs, the treatment burden and medicine familiarity were less important; the views of family and friends ranked lowest. There was a statistically significantly greater influence of the regular doctor for the concession card holders than general beneficiaries (93.6 vs. 84%, adjusted OR 2.80, 95% CI 1.31, 5.99). Concession card holders were more likely to favour doctors having more say in the decision‐making process (crude OR 1.69, 95% CI 1.28, 2.24), and more likely to report the most recent treatment decision being made by the doctor alone, compared with general beneficiaries (61.2 vs. 40.3%). Conclusion Medicine need, efficacy and safety are viewed as paramount for most patients, irrespective of insurance status. While patients report the importance of participation in treatment decisions, delegation of decision making to the doctor was common in practice.     

Child involvement in the paediatric consultation: a qualitative study of children and carers' views

Background This study aimed to investigate child and carers' attitudes towards child involvement in paediatric consultations. Methods Semi‐structured qualitative interviews explored child and carers' attitudes towards child involvement at different stages of the paediatric consultation process. Twenty families (21 children, 17 mothers and 5 fathers) were interviewed following a paediatric (index) consultation in two UK paediatric inpatient and outpatient departments. Results All but one family felt the child should be involved at some stage of the consultation process but the desired extent and nature of involvement depended on child, family and illness characteristics, as well as on the stages of the consultation. During history gathering, some parents and children felt it was the decision and responsibility of the parent to facilitate communication between the child and the doctor. Others expected the doctor to decide when and how to facilitate this process. At diagnosis the desired amount of information given to the child increased with increasing maturity in the child. Some felt making a diagnosis should be a collaborative process; others felt it was solely the domain of the doctor. In discussing and making a treatment plan, some children wanted to be given the choice of being involved and some wanted their parents to be responsible for implementing the plan. Some families with a seriously ill child, however, wanted the burden of involvement in the management plan taken away from them. Conclusions Families vary in their views about involvement of children in paediatric consultations in a way that may be unique to each child, family and illness. Moreover, different views were expressed about involvement in each stage of the consultative process and in management of the child's health. The challenge for doctors is to determine the level of involvement and information exchange favoured by a particular parent and child. Good practice recommendations emerging from the analysis are described.     

A Qualitative Study of Women's Decision to View or Not View an Ultrasound Image Before Early Medication Abortion

BackgroundTransvaginal ultrasounds are commonly performed for gestational dating of pregnancy before a medication abortion. This paper presents findings regarding women's perspectives on viewing the gestational dating ultrasound image, which arose from a study exploring women's medication abortion experience. By providing women the opportunity to talk about their medication abortion experience through open-ended interviews, women reported their experience of viewing or not viewing the ultrasound in detail, which to date has been underexplored.MethodsA constructivist, grounded theory approach was used. The purposive sample consisted of 18 women in the United States who experienced a medication abortion in the preceding 4 months.FindingsNot all women wanted to view the ultrasound; however, they all wanted a choice. Women wanted to view the image to confirm health and fertility, satisfy curiosity, and process their decision regarding the pregnancy. None of the women stated that they wanted to view the image as a prerequisite to making their decision to terminate the pregnancy; rather, viewing was a way to process their decision.ConclusionsWomen wanted a choice of whether to view the ultrasound image because they felt it was their right to decide whether to access this aspect of their personal health information. They wanted providers to engage in a dialogue about viewing the image or not and to respect their decision. Providers need to be appropriately prepared to offer women the choice to view and to support women in their decision.