Patients’ perceptions of safety if interpersonal continuity of care were to be disrupted

Objective  To determine if patients vary in perceptions of safety if interpersonal continuity were to be disrupted. If so, which characteristics are associated with feeling unsafe? Background  The extent to which patients’ preference for continuity with a personal physician is due to perceptions of safety is unclear. Design  Observational study (Wisconsin Longitudinal Study Graduate and Sibling Survey). Setting and participants  A total of 6827 respondents (most aged 63–66 years) who completed the 2003–06 survey round. Main variables studied  Age, gender, marital status, education, health insurance type, illnesses, medications, length of relationship with provider and place, personality type, decision‐making preference and trust in physician deliberation. Main outcome measures  Safety perception when visiting another doctor or clinic if own doctor were not available. Results  Twelve percent of respondents felt unsafe. After adjustment, as compared to those who felt safe, those who felt unsafe were more likely to be women (Odds ratio = 1.65, 95% confidence interval = 1.35–2.01), have more chronic conditions (1.27, 1.08–1.50) and have a longer relationship with a usual provider: 5–9 years (1.53, 1.11–2.10) 10–14 years (1.41, 1.02–1.95) and 15 or more years (1.62, 1.20–2.17) compared to 0–4 years. Those who preferred active participation in decision making and had trust in their physician were less likely to feel safe (1.63, 1.10–2.41). Conclusions  Certain older adults perceive being unsafe if not seeing their usual physician. Further research should investigate reasons for perceptions of safety if continuity were disrupted and any implications for care.     

Development and validation of an integrative scale to assess hope

Background  Hope includes the dimensions of time, goals, control, relations and personal characteristics. Existing tools that measure it vary in length and psychometric properties and cover different parts of its overall concept. Objectives  This study aimed to develop an instrument that integrates all relevant aspects of hope is concise, easy to use and shows good psychometric properties. Design  Three pre‐existing instruments (Miller Hope Scale, Herth Hope Index, Snyder Hope Scale) covering complementary and overlapping aspects of hope were administered cross‐sectionally to a general population sample (n = 489). Factor analysis was used for item reduction. Reliability and validity were tested using factor analysis and item correlations between the new scale and quality of life and depression scales. Setting and participants  The study was set in Austria. Participants were sampled from the general population using a quota sampling strategy. Results  The initial 60 items were reduced to a 23‐item scale with four dimensions: ‘trust and confidence’, ‘positive future orientation’, ‘social relations and personal value’ and ‘lack of perspective’. The new scale’s factor structure was highly stable and its internal consistency high (alpha = 0.92 for the overall scale, 0.80–0.85 for its subscales). Hope scores were negatively correlated with depression (r = −0.68) and positively with quality of life (r = 0.57), with the factor analysis and item discriminant validity supporting the new scale’s construct validity. Conclusions  The new scale comprehensively covers the concept of hope is significantly shorter than previous scales and shows satisfactory reliability and validity.     

Patient evaluations of accessibility and co‐ordination in general practice in Europe

Objective  To determine whether patient evaluations of the accessibility to general practice and co‐ordination with other care providers were associated with characteristics of general practice organizations. Background  In 1998 patients across Europe perceived that small general practices have better accessibility than large practices. Since then a number of changes in primary care have had impact on accessibility and co‐ordination of care. Design, setting and participants  The study was based on data from the European Practice Assessment study, an observational study in 284 general practices in 10 countries in 2004. Main outcome measures  Patient evaluations of general practice were measured with the 23‐item Europep instrument, from which seven items on accessibility and co‐ordination were selected in a principal factor analysis. Six practice characteristics were examined: percentage of female general practitioners, mean age of physicians, mean number of physician hours worked per week, number of general practitioners, number of care providers, urbanization level. Mixed regression models were applied, in which patients were clustered within practices, and practices within countries. Results  Practices with a higher numbers of care providers received less positive patient evaluations (b = −0.112, P = 0.004). The other practice characteristics were not related to patient evaluations. Only a small proportion of the total variation in patient evaluations of accessibility and co‐ordination (1.8%) was explained by characteristics of the general practice organizations. Conclusions  General practices have become larger in most developed countries in recent years, but patients seemed to prefer general practice organizations with fewer health professionals.     

Impact of patient information booklet on treatment decision – a randomized trial among women with heavy menstruation

Objective  Does a patient information booklet influence treatment for menorrhagia? Design  Randomized trial and a pre‐trial prospective cohort study. Setting  Gynaecology outpatient clinics in 14 Finnish hospitals. Participants  A total of 363 (randomized trial) plus 206 (cohort study) patients with menorrhagia. Intervention  An information booklet about menorrhagia and treatment options, mailed before the first visit to the outpatient clinic. Main outcome measures  Distribution of treatment modalities, knowledge about treatment options, satisfaction with communication with personnel and anxiety. Results  Treatment decision within 3 months was made more often in the intervention group than in the control group (96% and 89% respectively, P = 0.02). Oral medication was more frequently chosen, and newly introduced treatments (minor surgery, hormonal intrauterine system) were less frequently used in the intervention group (at 3‐month follow‐up 21% and 29%, respectively). The differences persisted at the 12‐month follow‐up. In the pre‐trial group, new treatment methods were less frequently chosen and used than in the control group. Additional information did not increase the number of surgical procedures used, improve knowledge, or influence satisfaction or anxiety. Conclusion  Additional information led to an increase in specific treatment decisions and changed the distribution of used treatments without increasing the number of surgical procedures. The study suggests that well‐informed women adopting an active role may counteract physicians’ emphasis on newly introduced treatments.     

Multidisciplinary diabetes team care: the experiences of young adults with Type 1 diabetes

Background

This research examined whether young adults with Type 1 diabetes engage with the multidisciplinary consultation process and if not, then why.

Methods

We designed a web‐based self‐reported survey, available online from February to May 2011, for Australian adults 18–35 years with Type 1 diabetes. Respondents were asked about which clinicians they consulted to assist with self‐management. To expand on the results of the survey, we interviewed 33 respondents.

Results

Survey: Respondents (n = 150) consulted with the following clinicians: endocrinologist and diabetes educators: 23.3%; endocrinologist only: 18.0%; endocrinologist, diabetes educators and dieticians: 14.6%; endocrinologist, diabetes educators, dietician and general practitioners (GP): 11.3%; endocrinologist and GP: 10.6%; GP only: 4.6%; all clinicians recommended to assist with self‐management: 1.3%; 2.7% did not consult any clinician. Interview: Participants (n = 33) reported eight key disincentives to consultation with multidisciplinary clinicians. These were time constraints; provision of conflicting advice; inaccessibility of health services; variation in service standards; cost constraints; failure of clinicians to refer to other clinicians; lack of opportunity to build a therapeutic relationship; and failure of clinicians to engage in shared decision making.

Conclusion

Our results indicate that high attrition rates of young adults with Type 1 diabetes from recommended diabetes health services is linked to the failure of those services to meet the needs and preferences of their patients. The identified needs and preferences included joint consultation with multi‐disciplinary team clinicians; flexible access to advice by email or telephone consultation; and shared decision making. Patient engagement in health‐service re‐design has implications for improved health‐service delivery and enhanced treatment outcomes.     

Why do women not return family history forms when referred to breast cancer genetics services? A mixed‐method study

Background

Personal and family data forms, completed by women referred to breast cancer genetics clinics, are valuable tools for verification and extension of family history, crucial steps in accurate risk evaluation. A significant minority of women do not complete and return these forms, despite reminders, even when completion is a pre‐requisite for a clinic appointment.

Objective

To facilitate access of women at increased familial risk of breast cancer to screening and counselling services by investigating reasons for non‐return of the forms.

Participants and Design

Based on a single regional ‘breast cancer family’ service in the UK, Analysis of quantitative data comparing women who did not return forms (n = 55) with those who had done so (n = 59), together with qualitative evaluation of potential barriers to form‐completion through semi‐structured telephone interviews with a random subset of ‘non‐returners’ (n = 23).

Results

Non‐returners have higher proportions of the very young (below the age at which surveillance could be offered) and of women from lower social deprivation categories. Interviews revealed that the majority of non‐returners are anxious, rather than unconcerned about their breast cancer risk and circumstances and attitudes contributed to non‐compliance. Twenty‐one participants confirmed that they would welcome an appointment at a ‘breast cancer family’ clinic, but nine did not attend for the appointment. They were significantly younger than those who attend, but were not at lower familial risk.

Discussion and Conclusions

Many women who fail to complete and return a family history form would benefit from risk assessment and genetic counselling. Several steps are suggested that might help them access the relevant services.     

The role of health professionals in informing cancer patients: findings from The Teamwork Project (phase one)

Background

The Teamwork Project is managed by the National Cancer Alliance (NCA) and funded jointly by the National Lottery Charities Board and the Department of Health. The aim of the Project is to produce a Personal Information File to help people with cancer work in partnership with health professionals. Phase one was carried out between September 1998 and April 2000.The Teamwork Project arose as a direct result of the NCA report, ‘Patient‐Centred Cancer Services’? – What Patients Say, ¹ one of a number of studies that found people with cancer want to be involved in decisions about their treatment and care. The study also found that, for this involvement to be successful, health professionals need to support patients in accessing information relevant to their individual needs and help them understand and apply that information. The focus of The Teamwork Project is to help provide a practical solution to meeting this information need.

Approach

The Teamwork Project has used a wide‐range of methods including literature appraisal; patient questionnaires; focus groups; semi‐structured interviews and a consultation exercise. Throughout the Project there has been on‐going involvement from both patients and professionals.

Conclusions

There may be a divergence of views among health professionals in cancer services regarding their role as providers of patient information. Consequently, there may also be a significant variance in how their patients are informed in practice. This finding needs to be validated and the reasons for this understood if the full potential of the forthcoming National Health Service (NHS) Cancer Information Strategy is to be realised.     

Parents' decision making and access to preventive healthcare for young children: applying Andersen's Model

Background and objective

Implementing preventive health care for young children provides the best chance of improving health and changing a child''s life course. In Australia, despite government support for preventive health care, uptake of preventive services for young children is low. Using Andersen''s behavioural model of health‐care utilization, we aimed to understand how parents conceptualized their children''s preventive health care and how this impacted on access to preventive health‐care services.

Design

Semi‐structured telephone interviews conducted between May and July 2011.

Setting and participants

Twenty‐eight parents of children aged 3–5 years from three diverse socio‐economic areas of Melbourne, Australia.

Results

Thematic analysis showed parents'' access to child preventive health care was determined by birth order of their child, cultural health beliefs, personal health practices, relationship with the health provider and the costs associated with health services. Parents with more than one child placed their own experience ahead of professional expertise, and their younger children were less likely to complete routine preventive health checks. Concerns around developmental delays required validation through family, friends and childcare organizations before presentation to health services.

Conclusions

To improve child preventive health requires increased flexibility of services, strengthening of inter‐professional relationships and enhancement of parents'' knowledge about the importance of preventive health in early childhood. Policies that encourage continuity of care and remove point of service costs will further reduce barriers to preventive care for young children. Recent reforms in Australia''s primary health care and the expansion of child preventive health checks into general practice present a timely opportunity for this to occur.     

Do the organizational reforms of general practice care meet users’ concerns? The contribution of the Delphi method

Context  The debate over primary care reform in France, as in most OECD countries, centres on questions about efficacy and accessibility. Do these reforms actually respond to the users’ concerns? Objective  The objective of this study was to identify the importance that users attribute to different aspects of general practice (GP) care. Design  The method used was a variant of the classical Delphi approach, called Delphi ‘ranking‐type’. Between May and September 2009, 74 experts aged over 18 were recruited by ‘snowballing’ sampling. Three iterative rounds were required to identify the core aspects through a consensus‐building approach. Results  It is shown that users attribute a very high importance to the ‘doctor–patient relationship’ dimension. The following aspects ‘GP patient information about his/her illness’, ‘Clarity of communication and explanation’, and ‘Whether the GP seemed listen to the patient’ were evaluated by 96% of the experts as being of high importance. The coordination of GP was also considered as a very important aspect for 85% of the experts. In contrast, the aspects that belong to the organizational dimension appeared to be of relatively low importance for users. Conclusions  Our results support a comprehensive approach of care and argue in favour of care reorganization following the patient‐centred model. To promote organizational care reforms through the prism of the doctor–patient relationship could thus be a fruitful way to insure a better quality of care and the social acceptability of the reforms.     

Enhancing health‐care workers' understanding and thinking about people living with co‐occurring mental health and substance use issues through consumer‐led training

Background

Stigma and judgemental assumptions by health workers have been identified as key barriers to accessing health care for people living with co‐occurring mental health and substance use issues (dual diagnosis).

Objective

To evaluate the effectiveness of consumer‐led training by people with dual diagnosis in improving the knowledge, understanding and role adequacy of community health staff to work with this consumer group.

Methods

A controlled before‐and‐after study design with four waves of quantitative data collection was used. Qualitative data were collected to explore participants'' views about training. Participants were staff from two community health services from Victoria, Australia. Recruitment occurred across various work areas: reception, oral health, allied health, counselling and health promotion. At baseline, all participants attended a 4‐h clinician‐led training session. The intervention consisted of a 3‐h consumer‐led training session, developed and delivered by seven individuals living with dual diagnosis. Outcome measures included understanding of dual diagnosis, participants'' feelings of role adequacy and role legitimacy, personal views, and training outcomes and relevance.

Results

Consumer‐led training was associated with a significant increase in understanding. The combination of clinician‐led and consumer‐led training was associated with a positive change in role adequacy.

Conclusions

Consumer‐led training is a promising approach to enhance primary health‐care workers'' understanding of the issues faced by dual‐diagnosis consumers, with such positive effects persisting over time. Used alongside other organizational capacity building strategies, consumer‐led training has the potential to help address stigma and judgemental attitudes by health workers and improve access to services for this consumer group.     

Pandemic influenza communication: views from a deliberative forum

Objective  To use a deliberative forum to elicit community perspectives on communication about pandemic influenza planning, and to compare these findings with the current Australian national communication strategy. Design  Deliberative forum of 12 persons randomly selected from urban South Australia. Forum members were briefed by experts in infection control, virology, ethics and public policy before deliberating on four key questions: what, how and when should the community be told about pandemic influenza and by whom? Results  The forum recommended provision of detailed and comprehensive information by credible experts, rather than politicians, using a variety of media including television and internet. Recommendations included cumulative communication to build expertise in the community, and specific strategies to include groups such as young people, people with physical or mental disabilities, and rural and remote communities. Information provided should be practical, accurate, and timely, with no ‘holding back’ about the seriousness of a pandemic. The forum expressed confidence in the expert witnesses, despite the acknowledged uncertainty of many of the predictions. Discussion and Conclusion  The deliberative forum’s recommendations were largely consistent with the Australian national pandemic influenza communication strategy and the relevant literature. However, the forum recommended: release of more detailed information than currently proposed in the national strategy; use of non‐political spokespersons; and use of novel communication methods. Their acceptance of uncertainty suggests that policy makers should be open about the limits of knowledge in potentially threatening situations. Our findings show that deliberative forums can provide community perspectives on topics such as communication about pandemic influenza.     

How does trust affect patient preferences for participation in decision‐making?

Objective  Does trust in physicians aid or hinder patient autonomy? We examine the relationship between trust in the recipient''s doctor, and desire for a participative role in decisions about medical treatment. Design  We conducted a cross‐sectional survey in an urban Canadian teaching hospital. Setting and participants  A total of 606 respondents in three clinics (breast cancer, prostate cancer, fracture) completed questionnaires. Variables studied  The instrument included the Problem Solving Decision Making (PSDM) Scale, which used two vignettes (current health condition, chest pain) to categorize respondents by preferred role, and the Trust‐in‐Physician Scale. Results  Few respondents preferred an autonomous role (2.9% for the current health condition vignette and 1.2% for the chest pain vignette); most preferred shared decision‐making (DM) (67.3% current health condition; 48.7% chest pain) or a passive role (29.6% current health condition; 50.1% chest pain). Trust‐in‐physician yielded 6.3% with blind trust, 36.1% with high trust, 48.6% moderate trust and 9.0% low trust. As hypothesized, autonomous patients had relatively low levels of trust, passive respondents were more likely to have blind trust, while shared respondents had high but not excessive trust. Trust had a significant influence on preferred role even after controlling for the demographic factors such as sex, age and education. Conclusions  Very few respondents wish an autonomous role; those who do tend to have lower trust in their providers. Familiarity with a clinical condition increases desire for a shared (as opposed to passive) role. Shared DM often accompanies, and may require, a trusting patient–physician relationship.     

Effects of Participation and Collaboration on Perceived Effectiveness of Core Public Health Functions

Objectives. We measured the perceived effectiveness of core public health services at the community level, and we assessed whether certain system factors were associated with perceived effectiveness.Methods. We used data from the National Longitudinal Survey of Local Public Health Systems, conducted in 1998 and 2006, to examine the effects of the contributions of health departments and the participation of other agencies to core functions on the perceived effectiveness of community delivery of core assessment, policy development, and assurance functions.Results. Perceived effectiveness increased over time for all 3 core function areas (range = 41%–53% in 2006). Multivariable results showed that local health department contribution to effort was positively associated with perceived effectiveness of public health core functions. The significance of participation of individual types of agencies or organizations varied by core function areas, except for local government agencies and hospitals, which were significantly positively associated with all 3 core function areas.Conclusions. We furthered our understanding of the significance of the contributions and participations of local health departments and of other individual agencies or organizations in the perceived effectiveness of delivery of core functions.In the mid-1990s, the US Centers for Disease Control and Prevention commissioned a series of projects to identify services and activities that were considered important for protecting and improving public health at the community level, and that would serve as performance indicators for local public health systems.1 Through these projects, a consensus set of 20 practice performance measures were developed for 3 core public health function areas: assessment, policy development, and assurance functions.2 The box on the next page lists the 20 core function-related practice performance measures. The Institute of Medicine2 noted that these activities, or functions, corresponded to major phases of public problem-solving: problem identification (assessment); mobilization of necessary effort and resources (policy development); and assurance that vital conditions are in place, and that crucial services are received (assurance).

Core Function-Related Practice Performance Measures, 1995

LifeSkills for Men (LS4M): Pilot Evaluation of a Gender-Affirmative HIV and STI Prevention Intervention for Young Adult Transgender Men Who Have Sex with Men

Young adult transgender men who have sex with men (TMSM) engage in sexual behaviors that place them at risk of sexually transmitted infections (STIs) including HIV. To date, no HIV and STI prevention interventions have been developed specifically for young adult TMSM. To address this gap, the current study aimed to (1) adapt a small group-based behavioral HIV prevention intervention designed for young transgender women (“LifeSkills”) to address the unique HIV and STI prevention needs of young TMSM ages 18–29 years and (2) conduct a pilot evaluation of the intervention (“LifeSkills for Men”; LS4M). LS4M was carried out in an iterative approach with community input along the way, which allowed for refinement of the intervention manual and enhanced participant acceptability. A LS4M Task Force was convened to guide intervention development/adaptation and study implementation. Initially, focus groups were conducted to examine the sexual health needs, concerns, and stressors facing young TMSM (n = 12; mean age = 23.8 years; 16.7 % people of color). Next, LS4M was pilot tested (n = 17; mean age = 24.3 years; 23.5 % people of color) to assess acceptability with the study population and feasibility of all study procedures. Overall attendance, participation rates, and positive feedback from participants demonstrate that LS4M is highly acceptable and feasible to carry out with young TMSM. Trends in outcome measures across 4 months of follow-up suggest that participation in the intervention may improve mental health, reduce internalized stigma, and reduce HIV- and STI-related risk behaviors. Further testing of the intervention enrolling young TMSM with recent sexual risk behavior at baseline and with a control group is warranted. Lessons learned for future work with young TMSM are discussed.     

Translators and mediators: bilingual young people's accounts of their interpreting work in health care

The interpreting work bilingual young people do in health care settings has largely been seen as a social problem, indicating deficiencies either in parents' language skills or in the provision of professional interpreting services. Little research has addressed this contribution young people make to health care work from their perspectives. This study explored the accounts of bilingual young people from four linguistic groups in London, including those from established minority groups and those more recently arrived. Young people reported extensive experience of interpreting in a number of settings, and identified a range of benefits to themselves and their families arising from their contributions, as well as some problems faced in achieving successful encounters. Focusing on young people's own accounts enabled their work to be conceptualised not as merely 'inappropriate and inadequate interpreting' but as a varied contribution to the informal economy of health care that ranged from simple translation to complex mediation between families, the wider community and the health care system.     

Application of multicriteria decision analysis in health care: a systematic review and bibliometric analysis

BackgroundThe use of Multi‐Criteria Decision Analysis (MCDA) in health care has become common. However, the literature lacks systematic review trend analysis on the application of MCDA in health care.AimTo systematically identify applications of MCDA to the areas of health care, and to report on publication trends.MethodsEnglish language studies published from January 1, 1980 until October 1, 2013 were included. Electronic databases searches were supplemented by searching conference proceedings and relevant journals. Studies considered for inclusion were those using MCDA techniques within the areas of health care, and involving the participation of decision makers. A bibliometric analysis was undertaken to present the publication trends.ResultsA total of 66 citations met the inclusion criteria. An increase in publication trend occurred in the years 1990, 1997, 1999, 2005, 2008, and 2012. For the remaining years, the publication trend was either steady or declining. The trend shows that the number of publications reached its highest peak in 2012 (n = 9). Medical Decision Making was the dominant with the highest number published papers (n = 7). The majority of the studies were conducted in the US (n = 29). Medical Decision Making journal published the highest number of articles (n = 7). Analytic Hierarchy Process (n = 33) was the most used MCDA technique. Cancer was the most researched disease topic (n = 12). The most covered area of application was diagnosis and treatment (n = 26).ConclusionThe review shows that MCDA has been applied to a broad range of areas in the health care, with the use of a variety of methodological approaches. Further research is needed to develop practice guidelines for the appropriate application and reporting of MCDA methods.     

“Care Just Changes Your Life”: Factors Impacting upon the Mental Health of Children and Young People with Experiences of Care in Northern Ireland

This paper represents one element of a research project carried out into the mental health needs of children and young people with experiences of care in Northern Ireland. Focusing exclusively on qualitative data collected from 51 young people in care and aftercare, it discusses in the first instance how the challenges and difficulties faced by young people can manifest themselves in feelings and behaviours that may exemplify poor mental well-being. In doing so it provides an understanding of mental health in the context of these young people's lives. Through offering a more detailed account of some of the specific issues that put these young people at increased risk, it highlights areas for further work and consideration as a means of protecting them against these risks. These include: dealing with experiences prior to care; easing and “normalising” the experience of living in care; and enhancing “safety nets” after care. A key objective of the research is to inform policy and practice through the accounts of children and young people. It is argued that more work needs to be done to find creative ways of enhancing the day-to-day experiences of young people while in care and when leaving care.