Development of a model to guide decision making in amyotrophic lateral sclerosis multidisciplinary care

Background

Patients with amyotrophic lateral sclerosis (ALS) face numerous decisions for symptom management and quality of life. Models of decision making in chronic disease and cancer care are insufficient for the complex and changing needs of patients with ALS .

Objective

The aim was to examine the question: how can decision making that is both effective and patient‐centred be enacted in ALS multidisciplinary care?

Setting and participants

Fifty‐four respondents (32 health professionals, 14 patients and eight carers) from two specialized ALS multidisciplinary clinics participated in semi‐structured interviews. Interviews were transcribed, coded and analysed thematically.

Results

Comparison of stakeholder perspectives revealed six key themes of ALS decision making. These were the decision‐making process; patient‐centred focus; timing and planning; information sources; engagement with specialized ALS services; and access to non‐specialized services. A model, embedded in the specialized ALS multidisciplinary clinic, was derived to guide patient decision making. The model is cyclic, with four stages: ‘Participant Engagement’; ‘Option Information’; ‘Option Deliberation’; and ‘Decision Implementation’.

Discussion

Effective and patient‐centred decision making is enhanced by the structure of the specialized ALS clinic, which promotes patients'' symptom management and quality of life goals. However, patient and carer engagement in ALS decision making is tested by the dynamic nature of ALS, and patient and family distress. Our model optimizes patient‐centred decision making, by incorporating patients'' cyclic decision‐making patterns and facilitating carer inclusion in decision processes.

Conclusions

The model captures the complexities of patient‐centred decision making in ALS. The framework can assist patients and carers, health professionals, researchers and policymakers in this challenging disease environment.     

Exploring older and younger adults' preferences for health information and participation in decision making using the Health Information Wants Questionnaire (HIWQ)

Context

Existing measurements of patient preferences cover only a limited range of health information and participation in decision making. A broader approach is necessary to understand the breadth and variations in patient preferences.

Objective

To explore the breadth and variances in patient preferences for health information and participation in decision making and to understand the relationship between age and each type of preference.

Design

The Health Information Wants Questionnaire (HIWQ) was administered during May–December 2010 to gather data about the information and corresponding decision‐making autonomy participants would want in seven areas: diagnosis, treatment, laboratory tests, self‐care, complementary and alternative medicine (CAM), psychosocial factors and health‐care providers.

Setting

A large state university, public libraries and senior centres in Maryland, USA.

Participants

A convenience sample of 438 individuals, including 226 undergraduates (mean age = 20; SD = 2.15) and 212 community‐dwelling older adults (mean age = 72; SD = 9.00).

Main Outcome Measures

Ratings on the information and decision‐making items of the HIWQ.

Results

Participants expressed higher levels of preference for information than for participation in decision making on six of seven subscales. On the psychosocial subscale, they expressed stronger desire for participation in decision making than for information. Age had no predictive effect on the overall preferences or specific preferences for information and participation in decision making about standard treatments and CAM. The predictive effect of age on the other types of preferences varied significantly.

Conclusions

Physicians should take into account the breadth and variations in patient preferences. The predictive effect of age on patient preferences varied depending on the specific area of preferences.     

Risk assessment and clinical decision making for colorectal cancer screening

Background

Shared decision making (SDM) related to test preference has been advocated as a potentially effective strategy for increasing adherence to colorectal cancer (CRC) screening, yet primary care providers (PCPs) are often reluctant to comply with patient preferences if they differ from their own. Risk stratification advanced colorectal neoplasia (ACN) provides a rational strategy for reconciling these differences.

Objective

To assess the importance of risk stratification in PCP decision making related to test preference for average‐risk patients and receptivity to use of an electronic risk assessment tool for ACN to facilitate SDM.

Design

Mixed methods, including qualitative key informant interviews and a cross‐sectional survey.

Participants

PCPs at an urban, academic safety‐net institution.

Main Measures

Screening preferences, factors influencing patient recommendations and receptivity to use of a risk stratification tool.

Key Results

Nine PCPs participated in interviews and 57 completed the survey. Despite an overwhelming preference for colonoscopy by 95% of respondents, patient risk (67%) and patient preferences (63%) were more influential in their decision making than patient comorbidities (31%; P < 0.001). Age was the single most influential risk factor (excluding family history), with <20% of respondents choosing factors other than age. Most respondents reported that they would be likely to use a risk stratification tool in their practice either ‘often’ (43%) or sometimes (53%).

Conclusions

Risk stratification was perceived to be important in clinical decision making, yet few providers considered risk factors other than age for average‐risk patients. Providers were receptive to the use of a risk assessment tool for ACN when recommending an appropriate screening test for select patients.     

Comparing the nine‐item Shared Decision‐Making Questionnaire to the OPTION Scale – an attempt to establish convergent validity

Background

While there has been a clear move towards shared decision‐making (SDM) in the last few years, the measurement of SDM‐related constructs remains challenging. There has been a call for further psychometric testing of known scales, especially regarding validity aspects.

Objective

To test convergent validity of the nine‐item Shared Decision‐Making Questionnaire (SDM‐Q‐9) by comparing it to the OPTION Scale.

Design

Cross‐sectional study.

Setting and participants

Data were collected in outpatient care practices. Patients suffering from chronic diseases and facing a medical decision were included in the study.

Methods

Consultations were evaluated using the OPTION Scale. Patients completed the SDM‐Q‐9 after the consultation. First, the internal consistency of both scales and the inter‐rater reliability of the OPTION Scale were calculated. To analyse the convergent validity of the SDM‐Q‐9, correlation between the patient (SDM‐Q‐9) and expert ratings (OPTION Scale) was calculated.

Results

A total of 21 physicians provided analysable data of consultations with 63 patients. Analyses revealed good internal consistency of the SDM‐Q‐9 and limited internal consistency of the OPTION Scale. Inter‐rater reliability of the latter was less than optimal. Association between the total scores of both instruments was weak with a Spearman correlation of r = 0.19 and did not reach statistical significance.

Discussion

By the use of the OPTION Scale convergent validity of the SDM‐Q‐9 could not be established. Several possible explanations for this result are discussed.

Conclusion

This study shows that the measurement of SDM remains challenging.     

Impact of clinical and patient‐reported outcomes on patient satisfaction with cataract extraction

Background

To date, factors that influence satisfaction with cataract surgery have not been broadly explored.

Objective

To identify variables related to patient satisfaction after cataract extraction by phacoemulsification and to determine the relationship between satisfaction and visual acuity (VA) and visual function (VF).

Design

Prospective cohort study.

Setting

Five hospitals belonging to the Basque Health Care Service.

Participants

4335 consecutive patients undergoing cataract extraction.

Interventions

Clinical data on vision were collected before the intervention and 6 weeks afterwards. Before cataract extraction, patients answered a global question about their expectations for the procedure, answered three questions related to specific activities (reading, going out and recognizing people, and doing housework) and completed the Visual Function‐14 (VF‐14) and Short‐Form‐36 (SF‐36) instruments. Three months after cataract extraction, they again completed the VF‐14 and SF‐36 along with questions about global satisfaction with the procedure and satisfaction with the three specific activities.

Main outcome measures

Three months after cataract extraction, they again completed the VF‐14 and SF‐36 along with questions about global satisfaction with the procedure and satisfaction with the three specific activities.

Results

Pre‐intervention VA and VF‐14 scores and their post‐intervention changes were associated with both global satisfaction and satisfaction with the ability to perform specific activities. Unresolved ocular complications were related to global satisfaction with cataract extraction (OR _95% = 0.39_{(0.27, 0.55)}, P < 0.001). Both the mental and physical component scales of the SF‐36 were related to global satisfaction. A group of patients were not satisfied with the intervention in spite of achieving similar vision‐related improvements as patients who were quite satisfied with the procedure.

Conclusion

Satisfaction with cataract extraction is related to clinical outcomes and is also associated with patients'' expectations of their improvement in visual function.     

Managing the pain of labour: factors associated with the use of labour pain management for pregnant Australian women

Background

Despite high rates of women''s use of intrapartum pain management techniques, little is known about the factors that influence such use.

Objective

Examine the determinants associated with women''s use of labour pain management.

Design

Cross‐sectional survey of a substudy of women from the ‘young’ cohort of the Australian Longitudinal Study of Women''s Health (ALSWH).

Setting and participants

Women aged 31–35 years who identified as being pregnant or recently given birth in the 2009 ALSWH survey (n = 2445) were recruited for the substudy. The substudy survey was completed by 1835 women (RR = 79.2%).

Main variables studied

Determinants examined included pregnancy health and maternity care [including complementary and alternative medicine (CAM)] for their most recent pregnancy and any previous pregnancies. Participants'' attitudes and beliefs related to both CAM and maternity care were also included in the analysis.

Main outcome measures

The outcome measures examined were the use of both pharmacological and non‐pharmacological pain management techniques (NPMT).

Results

Differences were seen in the effects of demographics, health service utilization, health status, use of CAM, and attitudes and beliefs upon use of intrapartum pain management techniques across all categories. The only variable that was identified as a determinant for use of all types of pain management techniques was a previous caesarean section (CS).

Discussion and conclusions

The effect of key determinants on women''s use of pain management techniques differs significantly, and, other than CS, no one determinant is clearly influential in the use of all pain management options.     

Assessments of the extent to which health‐care providers involve patients in decision making: a systematic review of studies using the OPTION instrument

Background

We have no clear overview of the extent to which health‐care providers involve patients in the decision‐making process during consultations. The Observing Patient Involvement in Decision Making instrument (OPTION) was designed to assess this.

Objective

To systematically review studies that used the OPTION instrument to observe the extent to which health‐care providers involve patients in decision making across a range of clinical contexts, including different health professions and lengths of consultation.

Search strategy

We conducted online literature searches in multiple databases (2001–12) and gathered further data through networking.

Inclusion criteria

(i) OPTION scores as reported outcomes and (ii) health‐care providers and patients as study participants. For analysis, we only included studies using the revised scale.

Data extraction

Extracted data included: (i) study and participant characteristics and (ii) OPTION outcomes (scores, statistical associations and reported psychometric results). We also assessed the quality of OPTION outcomes reporting.

Main results

We found 33 eligible studies, 29 of which used the revised scale. Overall, we found low levels of patient‐involving behaviours: in cases where no intervention was used to implement shared decision making (SDM), the mean OPTION score was 23 ± 14 (0–100 scale). When assessed, the variables most consistently associated with higher OPTION scores were interventions to implement SDM (n = 8/9) and duration of consultations (n = 8/15).

Conclusions

Whatever the clinical context, few health‐care providers consistently attempt to facilitate patient involvement, and even fewer adjust care to patient preferences. However, both SDM interventions and longer consultations could improve this.     

Do people really know what makes a family history of cancer?

Background

Family history is often referred to as a family tree in casual everyday conservations, but it carries a different connotation in medicine. This study is the first to investigate people''s understanding of ‘family medical history’ and the concept of ‘family’ in the context of inherited cancer.

Methods

Three hundred and nine staff at the Faculty of Medicine and Health, University of Leeds completed an online web survey.

Results

Not all respondents understood or knew what makes a family history of cancer. Only 54% knew exactly the type of information required to make a family history. Apart from blood relatives, adopted and step‐siblings, step parents, in‐laws, spouses, friends and colleagues were also named as ‘family’ for family history taking. Personal experience of living with cancer and academic qualification were not significant in influencing knowledge of family history.

Conclusions

There is misunderstanding and poor knowledge of family history of cancer and the type of information required to make a family history even in a sample of people teaching and researching medicine and health issues. Public understanding of the value of family medical history in cancer prevention and management is important if informed clinical decisions and appropriate health care are to be delivered.     

What primary health‐care services are Australian consumers willing to accept from nurse practitioners? A National Survey

Background

Nurses are becoming increasingly important as providers of primary health care in Australia. In November 2010, Medicare provider rights and Pharmaceutical Benefits Scheme rights for nurse practitioners, working in private practice and in collaboration with a medical practitioner, were introduced in Australia. Although international evidence suggests that nurse practitioners would be appropriate and acceptable providers of care at the first point of contact, such as primary health care, there is little Australian evidence about what care consumers are willing to accept from nurse practitioners.

Objectives

To ascertain what care Australian health‐care consumers would accept from nurse practitioners in this setting.

Participants

Australian adults over 18 years of age.

Methods

National Survey delivered online. Information about the survey was disseminated through a media campaign, stakeholder engagement and through the health‐care consumer networks nationally.

Results

The total number of respondents that started the survey was n = 1883. Ninety‐five percentage (n = 1784) of respondents completed the survey. The majority of respondents were women, aged 25–54 years, had completed tertiary education and had an annual household income of more than A$80 000. The majority of the respondents (n = 1562, 87%) said they would be prepared to see a nurse practitioner for some of their primary health‐care needs.

Conclusions

The findings of this study suggest consumers are accepting of a range of activities undertaken by nurse practitioners in primary health care and this has relevance for primary health‐care workforce mix and organization, particularly for areas that are underserved by medical practitioners.     

Shared decision‐making behaviours in health professionals: a systematic review of studies based on the Theory of Planned Behaviour

Background

Shared decision making (SDM) requires health professionals to change their practice. Socio‐cognitive theories, such as the Theory of Planned Behaviour (TPB), provide the needed theoretical underpinnings for designing behaviour change interventions.

Objective

We systematically reviewed studies that used the TPB to assess SDM behaviours in health professionals to explore how theory is being used to explain influences on SDM intentions and/or behaviours, and which construct is identified as most influential.

Search strategy

We searched PsycINFO, MEDLINE, EMBASE, CINAHL, Index to theses, Proquest dissertations and Current Contents for all years up to April 2012.

Inclusion criteria

We included all studies in French or English that used the TPB and related socio‐cognitive theories to assess SDM behavioural intentions or behaviours in health professionals. We used Makoul & Clayman''s integrative SDM model to identify SDM behaviours.

Data extraction and synthesis

We extracted study characteristics, nature of the socio‐cognitive theory, SDM behaviour, and theory‐based determinants of the SDM behavioural intention or behaviour. We computed simple frequency counts.

Main results

Of 12 388 titles, we assessed 136 full‐text articles for eligibility. We kept 20 eligible studies, all published in English between 1996 and 2012. Studies were conducted in Canada (n = 8), the USA (n = 6), the Netherlands (n = 3), the United Kingdom (n = 2) and Australia (n = 1). The determinant most frequently and significantly associated with intention was the subjective norm (n = 15/21 analyses).

Discussion

There was great variance in the way socio‐cognitive theories predicted SDM intention and/or behaviour, but frequency of significance indicated that subjective norm was most influential.     

What factors influence older adults to discuss falls with their health‐care providers?

Objective

To identify from the older adults'' perspective, the factors associated with discussion about falls with their general practitioners and other health professionals and the factors associated with initiation of these discussions. We explored the content of and barriers to discussion about falls.

Methods

A prospective cohort study where a baseline cross‐sectional survey was followed by a survey 1 year later. Survey domains were drawn from constructs of behavioural change models. Data from 245 older community dwellers in Victoria, Australia, in the follow‐up survey were used for this study. Survey format consisted of yes and no responses, Likert scale and open/closed‐ended responses.

Results

Few older adults talked with and initiated a talk with their health‐care providers about falls in the follow‐up period. Multiple regression showed anxiety or depression [OR = 2.78, 95% CI (1.21–6.41)], chronic medical conditions such as diabetes [OR = 2.71, 95% CI (1.19–6.17)] and having a self‐reported fall in the last 12 months [OR = 4.26, 95% CI (2.16–8.41)] were associated with discussion of falls with general practitioners. Higher perception of risk of sustaining a serious injury from falling [OR = 1.49 (1.03–2.13)] was associated with discussion about falls with other health professionals. Participants discussed various topics of falls with their health‐care providers. Different barriers to discussion about falls were identified.

Conclusion

Health‐care providers should routinely discuss falls prevention with older adults. Dissemination of evidence‐based advice and followed up with referral during consultations, particularly in general practitioners could advance falls prevention practice. The results could help to develop a conceptual framework to predict the likelihood of falls discussion.     

Is the Give Youth a Voice questionnaire an appropriate measure of teen‐centred care in paediatric oncology: a Rasch measurement theory analysis

Background

Adolescents have their own views about the cancer care they receive and how they feel they are treated, but their opinions are rarely solicited.

Objective

To determine whether the 56‐item Give Youth a Voice (GYV‐56), its subscales and its 20‐item short‐form, are clinically meaningful and psychometrically sound instruments that can be used to measure teen‐centred care (TCC) in paediatric oncology.

Design

Qualitative interviews and a questionnaire survey.

Setting and participants

Qualitative interviews with 38 childhood cancer survivors. GYV‐56 data collected from 200 paediatric cancer patients and survivors.

Main outcome measure

The GYV‐56, which measures the following four aspects of service delivery: Supportive and respectful relationships; Information sharing and communication; Supporting independence; and Teen‐centred services.

Results

Qualitative data provided broad support for the TCC conceptual framework and GYV‐56 items. After post‐hoc reduction of the response options from 7 to 3 (to correct for disordered thresholds), fit to the Rasch model was good, most items showed acceptable fit residuals and chi‐square P‐values, scale reliability were supported and item locations defined a continuum for TCC that was well‐targeted to the sample. By calibrating the items for each subscale and the short‐form to the full scale, the scores obtained on each measure are directly comparable.

Conclusion

Our study found initial support for use of the GYV with a reduced response option format for examining TCC in the adolescent oncology patients. in this paediatric population. Further research using the GYV is needed to elaborate upon our findings.     

Views on traditional Chinese medicine amongst Chinese population: a systematic review of qualitative and quantitative studies

Background

Health‐care professionals worldwide have started to appreciate patients'' perspectives on the use of complementary and alternative medicine (CAM) particularly given its popularity. However, cultural perspectives may vary and it may not be possible to apply research findings on the use of CAM from the west to the east.

Objective

This systematic review aims to synthesize usage patterns of traditional Chinese medicine (TCM) amongst Chinese populations in different parts of the world and explore potential geographical variations.

Search strategy

Six international and four Chinese databases were searched, and manual searches of relevant monographs and government publications were carried out.

Inclusion criteria

Quantitative, qualitative or mixed‐method research that aimed to investigate Chinese patients'' perception of, and perspectives on, TCM was included.

Data extraction and synthesis

For each study included, texts under the headings of ‘results’ or ‘findings’ were extracted and subjected to analysis. A thematic synthesis approach was adopted for synthesizing qualitative and quantitative studies.

Main results

Amongst the 28 studies included, twenty were quantitative surveys, six were qualitative studies and two were mixed‐method studies. The overall methodological quality was mediocre. Data synthesis suggested that patients from all regions share a common cultural affinity to TCM and consider it to be an effective complement to western medicine (WM) for treating chronic or serious diseases. However, heterogeneous views on (i) disclosing TCM use to WM doctors and (ii) the potential harm of herbs emerged across different study locations.

Discussion and conclusions

Future research should explore how variation in health systems may influence patients'' perception of CAM in different countries.     

Will the introduction of non‐invasive prenatal testing for Down's syndrome undermine informed choice?

Objective

To investigate whether the introduction of non‐invasive pre‐natal testing for Down''s syndrome (DS) has the potential to undermine informed choice.

Participants

Three hundred and ninety‐three health professionals; 523 pregnant women.

Methods

A cross‐sectional questionnaire study across nine maternity units and three conferences in the UK designed to assess opinions regarding test delivery and how information should be communicated to women when offered Down''s syndrome screening (DSS) or diagnosis using invasive (IDT) or non‐invasive testing (NIPT).

Results

Both pregnant women and health professionals in the NIPT and DSS groups were less likely than the IDT group to consider that testing should take place at a return visit or that obtaining written consent was necessary, and more likely to think testing should be carried out routinely. Compared to health professionals, pregnant women expressed a stronger preference for testing to occur on the same day as pre‐test counselling (P = 0.000) and for invasive testing to be offered routinely (P = 0.000). They were also more likely to indicate written consent as necessary for DSS (P = 0.000) and NIPT (P < 0.05).

Conclusions

Health professionals and pregnant women view the consenting process differently across antenatal test types. These differences suggest that informed choice may be undermined with the introduction of NIPT for DS into clinical practice. To maintain high standards of care, effective professional training programmes and practice guidelines are needed which prioritize informed consent and take into account the views and needs of service users.     

Immigrant women's experiences and views on the prevention of cervical cancer: a qualitative study

Background

Many Western countries have cervical cancer screening programmes and have implemented nation‐wide human papillomavirus (HPV) vaccination programmes for preventing cervical cancer.

Objective

To explore immigrant women''s experiences and views on the prevention of cervical cancer, screening, HPV vaccination and condom use.

Design

An exploratory qualitative study. The Health Belief Model (HBM) was used as a theoretical framework.

Setting and participants

Eight focus group interviews, 5–8 women in each group (average number 6,5), were conducted with 50 women aged 18–54, who studied Swedish for immigrants. Data were analysed by latent content analysis.

Results

Four themes emerged: (i) deprioritization of women''s health in home countries, (ii) positive attitude towards the availability of women''s health care in Sweden, (iii) positive and negative attitudes towards HPV vaccination, and (iv) communication barriers limit health care access. Even though the women were positive to the prevention of cervical cancer, several barriers were identified: difficulties in contacting health care due to language problems, limited knowledge regarding the relation between sexual transmission of HPV and cervical cancer, culturally determined gender roles and the fact that many of the women were not used to regular health check‐ups.

Conclusion

The women wanted to participate in cervical cancer prevention programmes and would accept HPV vaccination for their daughters, but expressed difficulties in understanding information from health‐care providers. Therefore, information needs to be in different languages and provided through different sources. Health‐care professionals should also consider immigrant women''s difficulties concerning cultural norms and pay attention to their experiences.     

Effect of intervention on decision making of treatment for disease progression,prostate‐specific antigen biochemical failure and prostate cancer death

Background

Patient preference for the choice of treatment modality for prostate cancer has increasingly gained attention.

Objective

To assess the impact of client‐oriented decision on long‐term mortality, disease progression and biochemical failure compared with standard treatment protocol (TP).

Methods

With data from a Finnish multicentre, randomized controlled trial with two arms [104 in the enhanced patient participation (EPP) arm and 106 in the TP arm], disease‐specific and disease‐free survival, biochemical failure with elevated prostate‐specific antigen (PSA) level and disease progression were compared between the two arms using Wilcoxon test and also Cox proportional hazards regression model.

Results

Patients in the EPP arm had a higher risk of death by 37% [HR, 1.37 (0.87–2.17)] compared with those in the TP arm. Patients in the EPP arm were at increased risk of having biochemical failure by 14% [HR, 1.14 (0.72–1.79)] and for having disease progression by 2% [HR, 1.02 (0.61–1.70)] compared with those in the TP arm. All the differences were non‐significant.

Conclusions

Patients actively involved in the choice of treatment had higher risk of prostate cancer death but only slightly increased risk of biochemical failure and clinical disease progression. These findings would provide a good reference when patient autonomy for the choice of treatment modality is addressed.     

Choosing vs. allocating: discrete choice experiments and constant‐sum paired comparisons for the elicitation of societal preferences

Background

There is growing evidence of a reluctance to allocate health care solely on the basis of maximizing quality‐adjusted life years (QALYs). Stated preference methods can be used to elicit preferences for efficiency vs. equity in the allocation of health‐care resources.

Objective

To compare discrete choice experiment (DCE) and constant‐sum paired comparison (CSPC) methods for eliciting societal preferences.

Methods

Over a series of choice pairs, DCE respondents allocated a fixed budget to one preferred group and CSPC respondents allocated budget percentages between the groups. Questionnaires were compared in terms of completion rates, preference consistency, dominant preferences and derived attribute importance.

Results

There was no significant difference in the proportions that rated the questionnaires somewhat or extremely difficult, but a significantly greater proportion completed the DCE compared to the CSPC. Preference consistency was also higher in the DCE. The incidence of dominant preferences, including for aggregate QALYs, was low and not significantly different between questionnaires. Similarly, no CSCP respondents equalized budgets or outcomes in every task. Final health state was the most important attribute in both questionnaires, but the rankings diverged for the other attributes. Notably, the total patients'' treated attribute was important in the CSPC but insignificant in the DCE, perhaps reflecting a ‘prominence effect’.

Conclusions

Despite lower completion rates and preference consistency, CSPC may offer advantages over DCE in eliciting preferences over the distribution of resources and/or outcomes as well as attribute levels, avoiding extreme ‘all‐or‐nothing’ distributions and possibly aligning respondent attention more closely with a societal perspective.     

What do people appreciate in physicians' communication? An international study with focus groups using videotaped medical consultations

Background

The literature shows that the quality of communication is usually determined from a professional perspective. Patients or lay people are seldom involved in the development of quality indicators or communication.

Objective

To give voice to the lay people perspective on what constitutes ‘good communication’ by evoking their reactions to variations in physician communication.

Design

Lay people from four different countries watched the same videotaped standardized medical encounters and discussed their preferences in gender‐specific focus groups who were balanced in age groups.

Setting and participants

Two hundred and fifty‐nine lay people (64 NL, 72 IT, 75 UK and 48 BE) distributed over 35 focus groups of 6–8 persons each.

Main variables studied

Comments on doctors'' behaviours were classified by the GULiVer framework in terms of contents and preferences.

Results

Participants prevalently discussed ‘task‐oriented expressions’ (39%: competency, self‐confident, providing solutions), ‘affective oriented/emotional expressions'' (25%: empathy, listening, reassuring) and ‘process‐oriented expressions'' (23%: flexibility, summarizing, verifying). ‘Showing an affective attitude’ was most appreciated (positive percentage within category: 93%, particularly facilitations and inviting attitude), followed by ‘providing solution’ (85%). Among disfavoured behaviour, repetitions (88%), ‘writing and reading’ (54%) and asking permission (42%) were found.

Conclusions

Although an affective attitude is appreciated by nearly everybody, people may vary widely in their communication needs and preferences: what is ‘good communication’ for one person may be disliked or even a source of irritation for another. A physician should be flexible and capable of adapting the consultation to the different needs of different patients. This challenges the idea of general communication guidelines.     

Values and risks of second opinion in Japan's universal health‐care system

Background

Second opinion (SO) is widely recognized in Japan, but we do not know how patients view and use SO.

Objectives

To investigate optimum seeking of SO in Japan''s universal health‐care system.

Design, participants, and methods

Survey of patients at Tokyo Medical and Dental University Hospital. Of 365 responses, 67 had experienced SO with standardized protocol at SO Clinic; 82 had obtained SO elsewhere without instruction; 216 had never sought SO.

Main outcome measures

Views of values and risks of SO.

Results

Second opinion patients with standardized protocol better understood their illness, treatment options, individualized plan, and uncertainty in medicine, and also reported improved decision making compared with SO patients without the protocol (P < 0.05). However, more than half of respondents misunderstood SO as a way to change doctors or treatment. Second opinion respondents (n = 149) had a propensity to request treatment changes (P < 0.1) and more than one‐third (n = 82) did not tell SO doctor they were being treated by another doctor. The absolute majority of non‐SO patients would seek SO for a serious illness but would hesitate to tell their doctors.

Discussion and conclusion

Respondents recognized value of SO to improve understanding and decision making. This study also found risks in SO misuse which may be reinforced by Japan''s cultural tendencies and universal health‐care system. Our findings suggest steps to increase the benefit of SO: ensure involvement of original doctor, instruct patients about SO and help them organize their thinking before SO and facilitate patients'' return to the treating doctor for discussion and decision making.     

Assessing knowledge and attitudes towards screening among users of Faecal Immunochemical Test (FIT)

Background

Informed decision making is recognized as important in screening. Invitees should be provided with relevant information, enabling them to make an informed decision. This may be more difficult in ethnic minority and low socio‐economic status groups. We aimed to assess the proportion of informed decisions to participate in a faecal immunochemical test (FIT)‐based colorectal cancer (CRC) screening pilot and to explore differences in knowledge and attitude across various subgroups.

Methods

Asymptomatic persons aged 50–74 were invited to a second round of a Dutch FIT‐based pilot screening programme for CRC. An information leaflet containing all information relevant to enable informed decision making accompanied the invitation. Informed choice was assessed by a mailed questionnaire. Knowledge was elicited through 18 items and attitude towards screening through four items. Main outcome measure was the proportion of informed decision makers among participants. Differences between subgroups were evaluated using logistic regression.

Results

Of 5367 screening participants, 2774 (52%) completed the questionnaire. Knowledge was adequate in 2554 (92%); 2736 (99%) showed a positive attitude towards screening. A total of 2525 persons had made an informed choice (91%); male gender, low education level, non‐Dutch ethnicity and not speaking Dutch at home were negatively associated with having adequate knowledge in multivariable analysis.

Conclusion

In FIT‐based screening for CRC, the majority of responders made an informed decision to participate. However, we did not succeed in equally providing all population subgroups with sufficient information. Future initiatives should be aimed at reaching these groups to further enable informed decision making.