Survey of patients' experiences and perceptions of care provided by nurse and pharmacist independent prescribers in primary care

Background

In the United Kingdom, nurses and pharmacists who have undertaken additional post‐registration training can prescribe medicines for any medical condition within their competence (non‐medical prescribers, NMPs), but little is known about patients'' experiences and perceptions of this service.

Objective

to obtain feedback from primary care patients on the impact of prescribing by nurse independent prescribers (NIPs) and pharmacist independent prescribers (PIPs) on experiences of the consultation, the patient–professional relationship, access to medicines, quality of care, choice, knowledge, patient‐reported adherence and control of their condition.

Design

Two cross‐sectional postal surveys.

Setting and participants

Patients prescribed for by either NIPs or PIPs in six general practices from different regions in England.

Results

30% of patients responded (294/975; 149/525 NIPs; 145/450 PIPs). Most said they were very satisfied with their last visit (94%; 87%), they were told as much as they wanted to know about their medicines (88%; 80%), and felt the independent prescriber really understood their point of view (87%; 75%). They had a good relationship with (89%; 79%) and confidence in (84%; 77%) their NMP. When comparing NMP and doctor prescribing services, most patients reported no difference in their experience of care provided, including access to it, control of condition, support for adherence, quality and safety of care.

Discussion and conclusions

Patients had positive perceptions and experience from their NMP visit. NMPs were well received, and patients'' responses indicated the establishment of rapport. They did not express a strong preference for care provided by either their non‐medical or medical prescriber.     

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.     

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.     

Patient perceptions of patient‐centred care: empirical test of a theoretical model

Aim

Patient perception measures are gaining increasing interest among scholars and practitioners. The aim of this study was to empirically examine a conceptual model of patient‐centred care using patient perception survey data.

Background

Patient‐centred care is one of the Institute of Medicine''s objectives for improving health care in the 21st century. Patient interviews conducted by the Picker Institute/Commonwealth Fund in the 1980s resulted in a theoretical model and survey questions with dimensions and attributes patients defined as patient‐centered.

Method

The present study used survey data from patients with overnight visits at 142 U.S. hospitals.

Results

Regression analysis found significant support for the theoretical model. Perceptions of emotional support had the strongest relationship with overall care ratings. Coordination of care, and physical comfort were strongly related as well.

Conclusion

Understanding how patients experience their care can help improve understanding of what patients believe is patient‐centred, and of how care processes relate to important patient outcomes.     

Mapping the impact of patient and public involvement on health and social care research: a systematic review

Background

There is an increasing international interest in patient and public involvement (PPI) in research, yet relatively little robust evidence exists about its impact on health and social care research.

Objective

To identify the impact of patient and public involvement on health and social care research.

Design

A systematic search of electronic databases and health libraries was undertaken from 1995 to 2009. Data were extracted and quality assessed utilizing the guidelines of the NHS Centre for Reviews and Dissemination 2009 and the Critical Appraisal Skills Programme (CASP). Grey literature was assessed using the Dixon‐Woods et al. (2005) checklist.

Inclusion criteria

All study types that reported the impact PPI had on the health and/or social care research study.

Main results

A total of 66 studies reporting the impact of PPI on health and social care research were included. The positive impacts identified enhanced the quality and appropriateness of research. Impacts were reported for all stages of research, including the development of user‐focused research objectives, development of user‐relevant research questions, development of user‐friendly information, questionnaires and interview schedules, more appropriate recruitment strategies for studies, consumer‐focused interpretation of data and enhanced implementation and dissemination of study results. Some challenging impacts were also identified.

Conclusion

This study provides the first international evidence of PPI impact that has emerged at all key stages of the research process. However, much of the evidence base concerning impact remains weak and needs significant enhancement in the next decade.     

Establishing local priorities for a health research agenda

Aim/Background

To describe the two‐stage prioritization process being used by the UK National Institute for Health Research''s Collaboration for Leadership in Applied Health Research and Care for the South‐West Peninsula (or PenCLAHRC) – a joint health service and university partnership and reflect on implications for the wider context of priority setting in health‐care research.

Method

PenCLAHRC''s process establishes the priorities of Stakeholders including service users across a regional health system for locally relevant health services research and implementation. Health research questions are collected from clinicians, academics and service users in Devon and Cornwall (UK) using a web‐based question formulation tool. There is a two‐stage prioritization process which uses explicit criteria and a wide Stakeholder group, including service users to identify important research questions relevant to the south‐west peninsula locality.

Results

To date, a wide variety of health research topics have been prioritized by the PenCLAHRC Stakeholders. The research agenda reflects the interests of academics, clinicians and service users in the local area. Potential challenges to implementation of the process include time constraints, variable quality of questions (including the language of research) and initiating and maintaining engagement in the process. Shared prioritization of local health research needs can be achieved between Stakeholders from a wide range of perspectives.

Conclusions

The processes developed have been successful and, with minor changes, will continue to be used during subsequent rounds of prioritization. Engagement of Stakeholders in establishing a research agenda encourages the most relevant health questions to be asked and may improve implementation of research findings and take up by service users.     

Opting out of dialysis – Exploring patients' decisions to forego dialysis in favour of conservative non‐dialytic management for end‐stage renal disease

Background

Dialysis prolongs the life of people with end‐stage renal disease (ESRD), but for patients who are elderly and suffer multiple comorbid illnesses the benefits of dialysis may be outweighed by its negative consequences. Non‐dialytic conservative management has therefore become an alternative treatment route, yet little is known on patients'' experience with choosing end‐of‐life treatment.

Aims

To gain insight into the decision‐making process leading to opting out of dialysis and the experience with conservative non‐dialytic management from the patients'' perspective.

Design

Qualitative study using semi‐structured interviews. Interpretative phenomenological analysis was undertaken as the framework for data analysis.

Setting/Participants

N = 9 ESRD participants who have taken the decision to forego dialysis were recruited from the advanced care programme under the National Healthcare Group, Singapore.

Results

Participants discussed life since ESRD diagnosis, and the personal and contextual factors that led them to choose conservative management. The perceived physical and financial burden of dialysis both for the individual but most importantly for their family, uncertainty over likely gains over risks which were fuelled by communication of negative dialysis stories of others, coupled with sense of life completion and achievement led them to refuse dialysis. All participants took ownership of their decision despite contrary advice by doctors and were content with their decision and current management.

Conclusions

Study highlights the factors driving patients'' decisions for conservative non‐dialytic management over dialysis to allow medical professionals to offer appropriate support to patients through their decision‐making process and in caring them for the rest of their lives.     

Does implementing a development plan for user participation in a mental hospital change patients' experience? A non‐randomized controlled study

Background

Governments in several countries attempt to strengthen user participation through instructing health‐care organizations to implement user participation initiatives. There is, however, little knowledge on the effect on patients'' experience from comprehensive plans for enhancing user participation in whole health service organizations.

Objective

To investigate whether implementing a development plan intending to enhance user participation in a mental hospital had any effect on the patients'' experience of user participation.

Design, setting and participants

A non‐randomized controlled study including patients in three mental hospitals in Central Norway, one intervention hospital and two control hospitals.

Interventions

A development plan intended to enhance user participation was implemented in the intervention hospital as a part of a larger reorganizational process. The plan included establishment of a patient education centre and a user office, purchase of user expertise, appointment of contact professionals for next of kin and improvement of the centre''s information and the professional culture.

Main outcome measures

Perceptions of Care, Inpatient Treatment Alliance Scale and questions made for this study.

Results

A total of 1651 patients participated. Implementing a development plan in a mental hospital intending to enhance user participation had no significant effect on the patients'' experience of user participation.

Discussions and conclusions

The lack of effect can be due to inappropriate initiatives or challenges in implementation processes. Further research should ensure that initiatives and implementation processes are appropriate to impact the patients'' experience.     

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.     

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.     

In search of compassion: a new taxonomy of compassionate physician behaviours

Background

Compassion has been extolled as a virtue in the physician–patient relationship as a response to patient suffering. However, there are few studies that systematically document the behavioural features of physician compassion and the ways in which physicians communicate compassion to patients.

Objective

To develop a taxonomy of compassionate behaviours and statements expressed by the physician that can be discerned by an outside observer.

Design

Qualitative analysis of audio‐recorded office visits between oncologists and patients with advanced cancer.

Setting and Participants

Oncologists (n = 23) and their patients with advanced cancer (n = 49) were recruited in the greater Rochester, New York, area. The physicians and patients were surveyed and had office visits audio recorded.

Main Outcome Measures

Audio recordings were listened to for qualitative assessment of communication skills.

Results

Our sensitizing framework was oriented around three elements of compassion: recognition of the patient''s suffering, emotional resonance and movement towards addressing suffering. Statements of compassion included direct statements, paralinguistic expressions and performative comments. Compassion frequently unfolded over the course of a conversation rather than being a single discrete event. Additionally, non‐verbal linguistic elements (e.g. silence) were frequently employed to communicate emotional resonance.

Discussion and Conclusions

This study is the first to systematically catalogue instances of compassionate communication in physician‐patient dialogues. Further refinement and validation of this preliminary taxonomy can guide future education and training interventions to facilitate compassion in physician–patient interactions.     

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.     

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.     

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.     

‘The onus is on me’: primary care patient views of Medicare‐funded team care in chronic disease management in Australia

Background and objective

This study investigated the views of primary care patients in receipt of Medicare‐funded team care for chronic disease management (CDM) in Australia.

Design

A qualitative study using a repeat in‐depth interview design.

Participants and setting

Twenty‐three patients (17 female), aged 32–89, were recruited over a six‐month period from two purposively selected general practices: one urban and one regional practice in Queensland, Australia.

Data collection procedure

Semi‐structured interviews were conducted with participants 6 months apart. An interview guide was used to ensure consistency of topics explored. Interviews were recorded and transcribed, and a thematic analysis was conducted.

Results

Patients in this study viewed the combined contributions of a GP and other health professionals in team care as thorough and reassuring. In this case of Medicare‐funded team care, patients also saw obligations within the structured care routine which cultivated a personal ethics of CDM. This was further influenced by how patients viewed their role in the health‐care relationship. Aside from personal obligations, Medicare funding got patients engaged in team care by providing financial incentives. Indeed, this was a defining factor in seeing allied health professionals. However, team care was also preferential due to patients'' valuations of costs and benefits.

Conclusion

Patients are likely to engage with a structured team care approach to CDM if there is a sense of personal obligation and sufficient financial incentive. The level of engagement in team care is likely to be optimized if patient expectations and preferences are considered in decisions.     

Perceptions and attitudes towards exercise among Chinese elders – the implications of culturally based self‐management strategies for effective health‐related help seeking and person‐centred care

Background

Encouraging the uptake of physical activity among a culturally diverse elderly population presents a challenge for health‐care providers across the world. Little is known about the health‐care needs of these populations, for example the increasingly ageing group of Chinese elders in many parts of the world who are now facing later life and increasing challenges to their health.

Objective

This study aimed to explore behaviours and attitudes towards exercise among older Chinese immigrants in the UK to provide insights into the health of Chinese populations in the UK and elsewhere.

Design

A Grounded Theory approach using purposive and theoretical sampling with in‐depth semi‐structured interviews.

Setting and participants

Chinese elders were recruited from Chinese communities in the North West of England. Thirty‐three participants were interviewed face‐to‐face and audio‐recorded.

Results

Participants self‐managed exercise based on cultural perceptions of health and ingrained Chinese values. Professional support and information was lacking and relied on folk norms rather than person‐centred recommendations for healthy living. Inappropriate exercise regimes could act as a substitute for seeking health‐related advice when exercise was often used as a self‐monitored barometer to assess their perceived health status.

Discussion and conclusion

Chinese elders may undertake inappropriate exercise, leading to high‐risk situations, if appropriate professional information is not provided. Health‐care practitioners should devote attention to understanding Chinese elders'' attitudes towards exercise, as this may ultimately lead to successful health promotion activities. A person‐centred approach that acknowledges and works with self‐management practices is advocated.     

Lay people's interpretation of ethical values related to mass vaccination; the case of A(H1N1) vaccination campaign in the province of Quebec (French Canada)

Background

Pandemic influenza ethics frameworks are based on respect of values and principles such as regard for autonomy, responsibility, transparency, solidarity and social justice. However, very few studies have addressed the way in which the general population views these moral norms.

Objectives

(i) To analyse the receptiveness of the population of French‐speaking Quebecers to certain ethical principles promoted by public health authorities during the AH1N1 vaccination campaign. (ii) To add to the limited number of empirical studies that examine the population''s perception of ethical values.

Design

Eight months after the end of the AH1N1 vaccination campaign in the Province of Quebec (Canada), 100 French‐speaking Quebecers were assembled in ten focus groups. Discussions focussed on the level of respect shown by public health authorities for individual autonomy, the limits of appeals for solidarity, the balance between vaccination efficiency and social justice towards non‐prioritized subpopulations, vaccination as a demonstration of civic duty and social responsibility.

Results

The population acknowledged a high level of individual responsibility towards family members and agreed to vaccination to protect children and ageing parents. However, the concepts of civic duty and solidarity did not elucidate unanimous support, despite the fact that social justice stood out as a dominant value of public morals.

Conclusion

The ethical principles promoted in influenza pandemic ethics frameworks are subject to reinterpretation by the population. An ethic of public health must consider their understanding of the fundamental values that legitimize mass vaccination.     

Introducing the patient's perspective in hospital health technology assessment (HTA): the views of HTA producers,hospital managers and patients

Background

The recent establishment of health technology assessment (HTA) units in University hospitals in the Province of Quebec (Canada) provides a unique opportunity to foster increased participation of patients in decisions regarding health technologies and interventions at the local level. However, little is known about factors that influence whether the patient''s perspective is taken into consideration when such decisions are made.

Objective

To explore the practices, perceptions and views of the various HTA stakeholders concerning patient involvement in HTA at the local level.

Method

Data were collected using semi‐structured interviews with 24 HTA producers and hospital managers and two focus groups with a total of 13 patient representatives.

Results

Patient representatives generally showed considerable interest in being involved in HTA. Our findings support the hypothesis that the patient perspective contributes to a more accurate and contextualized assessment of health technologies and produces HTA reports that are more useful for decision makers. They also suggest that participation throughout the assessment process could empower patients and improve their knowledge. Barriers to patient involvement in HTA at the local level are also discussed as well as potential strategies to overcome them.

Discussion and conclusion

This study contributes to knowledge that could guide interventions in favour of patient participation in HTA activities at the local level. Experimenting with different patient involvement strategies and assessing their impact is needed to provide evidence that will inform future interventions of this kind.     

Linking people with long‐term health conditions to healthy community activities: development of Patient‐Led Assessment for Network Support (PLANS)

Objective

To combine insights from service users with long‐term conditions (LTCs) to assist the development of a community referral intervention designed to promote engagement and improve access to health‐relevant resources.

Background

Social deprivation and reduced access to resources have been causally linked with social isolation and the ability to manage LTCs. Participation in meaningful activity has been associated with positive health benefits, and strategies to promote access to community activities have shown some potential to improve outcomes for people with LTCs. This suggests the need to develop an engagement and referral intervention in partnership with service users and community groups as part of mainstream self‐care support.

Method

A series of focus groups and interviews with members of community groups in Greater Manchester designed as an iterative and collaborative approach to elicit the role of personal and community networks that support long‐term condition management (LTCM) to develop a community referral tool.

Results

Participants reported a broad range of resources relevant to LTCM that often went beyond the usual concerns associated with self‐care. This helped to inform a tool (PLANS) to tailor access to types of community‐based resources which can support LTCM.

Conclusions

Understanding the everyday challenges of living with a LTC highlighted the importance of connecting and engaging with localized support for people. In response to this, we developed an intervention (PLANS) which tailors access to local resources based on personal preferences, needs and acceptability to encourage service users to engage with sustainable health choices.     

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.