Patient and public involvement in research: from tokenistic box ticking to valued team members.

BACKGROUND: Patient and public involvement (PPI) in research envisages a relationship built throughout the lifespan of a research project between academics, clinicians and PPI colleagues in order to inform, plan, execute and, in due course, disseminate and translate research. To be meaningful, all stakeholders need to actively engage in this exchange of expertise. However, despite some funders requiring PPI plans to be included in grant applications, there remains a gap between what is expected and what is delivered. MAIN BODY: As an exemplar, we reflect on how, in the Asthma UK Centre for Applied Research (AUKCAR), we set out to create a supportive, organised environment with the overarching value of 'keeping patients at the heart of everything we do'. The key has been in planning and creating a suitably funded organisational infrastructure with dedicated PPI researchers along with the development of and expectation to abide by an agreed set of norms and values. Specifically, expecting AUKCAR PhD students and early career researchers to engage with PPI has established a working mode that we hope will last. Regular interactions and proactive Patient Leads increase PPI network cohesion. CONCLUSION: With adaptation, the AUKCAR PPI model can be translated to international contexts.

The liminal self in people with multiple sclerosis: an interpretative phenomenological exploration of being diagnosed.

AIMS AND OBJECTIVES: To explore the lived experience of the meaning of being diagnosed with multiple sclerosis on the individual's sense of self. BACKGROUND: The time leading up to and immediately following the diagnosis of multiple sclerosis has been identified as a time period shrouded by uncertainty and one where individuals have a heightened desire to seek accurate information and support. The diagnosis brings changes to the way one views the self which has consequences for biographical construction. DESIGN: A hermeneutic phenomenological study. METHODS: In-depth qualitative interviews were conducted with 10 people recently diagnosed with multiple sclerosis. The data were analysed using interpretative phenomenological analysis. FINDINGS: This study presents the three master themes: the 'road to diagnosis', 'the liminal self' and 'learning to live with multiple sclerosis'. The diagnosis of multiple sclerosis may be conceptualised as a 'threshold moment' where the individual's sense of self is disrupted from the former taken-for-granted way of being and propose a framework which articulates the transition. CONCLUSION: The findings highlight the need for healthcare professionals to develop interventions to better support people affected by a new diagnosis of multiple sclerosis. The conceptual framework which has been developed from the data and presented in this study provides a new way of understanding the impact of the diagnosis on the individual's sense of self when affected by a new diagnosis of multiple sclerosis. This framework can guide healthcare professionals in the provision of supportive care around the time of diagnosis. RELEVANCE FOR CLINICAL PRACTICE: The findings provide practitioners with a new way of understanding the impact of the diagnosis on the individual's sense of self and a framework which can guide them in the provision of supportive care around the time of diagnosis.

The experiences of support persons of people newly diagnosed with multiple sclerosis: an interpretative phenomenological study.

AIM: This study explores the experience of the diagnosis of Multiple Sclerosis for the support person and identifies the impact on their lives. BACKGROUND: At the time of diagnosis, the support person may not be readily identified in a traditional caring role; however, the diagnosis itself brings with it the possibility of changes to the roles in the relationship and possible consequences for biographical construction. DESIGN: A hermeneutic phenomenological study. METHODS: A convenience sample of nine support persons was interviewed between December 2008-March 2010. The data were analysed using interpretative phenomenological analysis. FINDINGS: The participants in this study were often not readily identifiable as 'carers'; however, the diagnosis of Multiple Sclerosis implied a shift towards a caring role at some point in the future. The uncertainty surrounding the nature and progression of the condition left this identity hanging, incomplete and as such contributed to a liminal way of being. CONCLUSIONS: This paper reveals that biographical disruption is not limited to the person diagnosed with Multiple Sclerosis but that the support person also undergoes a transition to their sense of self to that of 'anticipatory carer'. The findings provide insight into the biographical and emotional impact of Multiple Sclerosis on the support persons early in the development of the condition.

Effectiveness and safety of orally administered immunotherapy for food allergies: a systematic review and meta-analysis.

The aim of using oral and sublingual immunotherapy with food allergies is to enable the safe consumption of foods containing these allergens in patients with food allergies. In the present study, a systematic review of intervention studies was undertaken; this involved the searching of eleven international databases for controlled clinical trials. We identified 1152 potentially relevant papers, from which we selected twenty-two reports of twenty-one eligible trials (i.e. eighteen randomised controlled trials and three controlled clinical trials). The meta-analysis revealed a substantially lower risk of reactions to the relevant food allergen in those receiving orally administered immunotherapy (risk ratios (RR) 0·21, 95 % CI 0·12, 0·38). The meta-analysis of immunological data demonstrated that skin prick test responses to the relevant food allergen significantly decreased with immunotherapy (mean difference - 2·96 mm, 95 % CI - 4·48, - 1·45), while allergen-specific IgG4 levels increased by an average of 19·9 (95 % CI 17·1, 22·6) µg/ml. Sensitivity analyses excluding studies at the highest risk of bias and subgroup analyses in relation to specific food allergens and treatment approaches generated comparable summary estimates of effectiveness and immunological changes. Pooling of the safety data revealed an increased risk of local (i.e. minor oropharyngeal/gastrointestinal) adverse reactions with immunotherapy (RR 1·47, 95 % CI 1·11, 1·95); there was a non-significant increased average risk of systemic adverse reactions with immunotherapy (RR 1·08, 95 % CI 0·97, 1·19). There is strong evidence that orally administered immunotherapy can induce immunomodulatory changes and thereby promote desensitisation to a range of foods. However, given the paucity of evidence on longer-term safety, effectiveness and cost-effectiveness, orally administered immunotherapy should not be used outside experimental conditions presently.

The practice of hope: a longitudinal, multi-perspective qualitative study among South Asian Sikhs and Muslims with life-limiting illness in Scotland.

OBJECTIVES: We explored the role of faith and religious identities in shaping end of life experiences in South Asian Muslims and Sikhs with life-limiting illnesses. DESIGN: Secondary analysis of data from a longitudinal, multi-perspective qualitative study of the experience of life-limiting illness and access to palliative care services among South Asian Sikhs and Muslims in Scotland. Up to three semi-structured interviews were conducted with 25 participants, 15 family members and 20 health care professionals over a period of 18 months. Analysis was informed by Mattingly's theory on hope. RESULTS: Hope emerged as a central construct in the accounts of illness constructed by the participants as they struggled to make sense of and uphold a meaningful life. Clinical encounters and, for some, religious beliefs served as sources of hope for participants. Hope unfolded as an active process that enabled them to live with the personal and in particular the social ramifications of their illness. Changing images of hope were formulated and reflected as illness progressed or treatments failed. These ranged from hoping for cure, prolonged life, the regaining of lost capabilities needed to fulfil social roles, or at times death when suffering and the consequences for the family became too hard to bear. CONCLUSIONS: For those suffering from a life-limiting illness, sustaining hope is a complex challenge. The social character of hope is evident as it focuses on envisioning a life that is worth living, not only for oneself, but most importantly for social relations. Continuity in care at the end of life and a holistic approach is important in order to enable patients to articulate complex and changing notions of hope that at times are silenced within families, and for patients to feel confident in discussing the possible role of religious beliefs in shaping personal notions of hope.

The quality of reporting of randomised controlled trials in asthma: a systematic review.

BACKGROUND: There are concerns about the reporting quality of asthma trials. AIMS: To describe the reporting of contemporary asthma trials and to identify factors associated with better reporting quality. METHODS: Two reviewers independently searched MEDLINE for randomised controlled trials (RCTs) of asthma published between January 2010 and July 2012 in leading generalist and specialist journals. We calculated the proportion of trials that adequately reported each Consolidated Standards of Reporting Trials (CONSORT) checklist item and an overall quality score for each trial. Factors associated with better reporting quality were investigated. RESULTS: Thirty-five RCTs satisfied our eligibility criteria. Four trials adequately reported <50% of the items, 15 adequately reported 50-60% of items, and 16 adequately reported >60% of items. Seventeen of the 38 CONSORT items were consistently well reported in more than two-thirds of the articles. In contrast, nine items were poorly reported in more than half the trials - namely, identification as a randomised trial in the title (40.0%), an adequate structured summary/abstract (48.6%), details of eligibility criteria (34.3%), recruitment (48.6%), randomisation procedures (22.9%), intervention (38.5%), harms (34.3%), the funding source (45.7%), and access to the full trial protocol (17.1%). Studies led by teams in high-income country settings were associated with better quality of reporting (relative risk=1.33, 95% CI 1.09 to 1.64). CONCLUSIONS: The quality of reporting in contemporary asthma literature remains suboptimal. We have identified important areas in which reporting quality needs to be improved.

Adrenaline auto-injectors for the treatment of anaphylaxis with and without cardiovascular collapse in the community.

BACKGROUND: Anaphylaxis is a serious hypersensitivity reaction that is rapid in onset and may cause death. Adrenaline (epinephrine) auto-injectors are recommended as the initial, potentially life-saving treatment of choice for anaphylaxis in the community, but they are not universally available and have limitations in their use. OBJECTIVES: To assess the effectiveness of adrenaline (epinephrine) auto-injectors in relieving respiratory, cardiovascular, and other symptoms during episodes of anaphylaxis that occur in the community. SEARCH METHODS: We searched the Cochrane Central Register of Controlled Trials (CENTRAL) (The Cochrane Library 2012, Issue 1), MEDLINE (Ovid SP) (1950 to January 2012), EMBASE (Ovid SP) (1980 to January 2012 ), CINAHL (EBSCO host) (1982 to January 2012 ), AMED (EBSCO host) (1985 to January 2012 ), LILACS, (BIREME) (1980 to January 2012 ), ISI Web of Science (1950 to January 2012 ). We adapted our search terms for other databases. We also searched websites listing on-going trials: the World Health Organization International Clinical Trials Registry Platform, the UK Clinical Research Network Study Portfolio, and the meta Register of Controlled Trials; and contacted pharmaceutical companies who manufacture adrenaline auto-injectors in an attempt to locate unpublished material. SELECTION CRITERIA: Randomized and quasi-randomized controlled trials comparing auto-injector administration of adrenaline with any control including no intervention, placebo, or other adrenergic agonists were eligible for inclusion. DATA COLLECTION AND ANALYSIS: Two authors independently assessed articles for inclusion. MAIN RESULTS: None of the 1328 studies that were identified satisfied the inclusion criteria. AUTHORS' CONCLUSIONS: Based on this review, we cannot make any new recommendations on the effectiveness of adrenaline auto-injectors for the treatment of anaphylaxis. Although randomized, double-blind, placebo-controlled clinical trials of high methodological quality are necessary to define the true extent of benefits from the administration of adrenaline in anaphylaxis via an auto-injector, such trials are unlikely to be performed in individuals experiencing anaphylaxis because of ethical concerns associated with randomization to placebo. There is, however, a need to consider trials in which, for example, auto-injectors of different doses of adrenaline and differing devices are compared in order to provide greater clarity on the dose and device of choice. Such trials would be practically challenging to conduct. In the absence of appropriate trials, we recommend that adrenaline administration by auto-injector should still be regarded as the most effective first-line treatment for the management of anaphylaxis in the community. In countries where auto-injectors are not commonly used, it may be possible to conduct trials to compare administration of adrenaline via auto-injector with adrenaline administered by syringe and ampoule, or comparing the effectiveness of two different types of auto-injector.

Integration of a nationally procured electronic health record system into user work practices.

BACKGROUND: Evidence suggests that many small- and medium-scale Electronic Health Record (EHR) implementations encounter problems, these often stemming from users' difficulties in accommodating the new technology into their work practices. There is the possibility that these challenges may be exacerbated in the context of the larger-scale, more standardised, implementation strategies now being pursued as part of major national modernisation initiatives. We sought to understand how England's centrally procured and delivered EHR software was integrated within the work practices of users in selected secondary and specialist care settings. METHODS: We conducted a qualitative longitudinal case study-based investigation drawing on sociotechnical theory in three purposefully selected sites implementing early functionality of a nationally procured EHR system. The complete dataset comprised semi-structured interview data from a total of 66 different participants, 38.5 hours of non-participant observation of use of the software in context, accompanying researcher field notes, and hospital documents (including project initiation and lessons learnt reports). Transcribed data were analysed thematically using a combination of deductive and inductive approaches, and drawing on NVivo8 software to facilitate coding. RESULTS: The nationally led "top-down" implementation and the associated focus on interoperability limited the opportunity to customise software to local needs. Lack of system usability led users to employ a range of workarounds unanticipated by management to compensate for the perceived shortcomings of the system. These had a number of knock-on effects relating to the nature of collaborative work, patterns of communication, the timeliness and availability of records (including paper) and the ability for hospital management to monitor organisational performance. CONCLUSIONS: This work has highlighted the importance of addressing potentially adverse unintended consequences of workarounds associated with the introduction of EHRs. This can be achieved with customisation, which is inevitably somewhat restricted in the context of attempts to implement national solutions. The tensions and potential trade-offs between achieving large-scale interoperability and local requirements is likely to be the subject of continuous debate in England and beyond with no easy answers in sight.

Strategies for living with the risk of anaphylaxis in adolescence: qualitative study of young people and their parents.

BACKGROUND: Adolescents with anaphylaxis are at increased risk of fatal outcomes. Gaps in their knowledge of day-to-day and emergency management have been identified. There are also gaps in services available to support adolescents at risk of anaphylaxis. AIMS: To explore the experiences and healthcare needs of adolescents living with the risk of anaphylaxis; to understand the perspectives of their parents; and to look at how care might be improved. METHODS: A qualitative study was undertaken using in-depth interviews with adolescents with a recent history of severe allergic reactions and with their parents. RESULTS: Twenty-six adolescents at risk of anaphylaxis living in Scotland and their parents (n=28) were recruited. Most anaphylactic reactions reported by participants appeared to result from accidents, misinformation, or inexperience. For many, management involved finding a balance between taking their allergies seriously whilst not allowing these concerns to dominate their lives. Risks were often difficult to judge, with reactions sometimes taking place even after careful checking of meal ingredients. Most admitted taking some risks with trace-labelled foods. Appropriate healthcare support for adolescents in learning to manage the risk of anaphylaxis independently and advice and support for their parents was inconsistently provided. CONCLUSIONS: Adolescents tend to see their risk management strategies as 'good enough', but these strategies were often inconsistent with clinical best practice and, in some cases, had not prevented reactions. Building on adolescents' existing skills and knowledge and the use of Internet and associated social media resources may help to support more effective self-management among adolescents.

Systems for the management of respiratory disease in primary care--an international series: United Kingdom.

INTRODUCTION: The UK National Health Service (NHS) is essentially publicly funded through general taxation. Challenges facing the NHS include the rise in prevalence of long-term conditions and financial pressures. NATIONAL POLICY TRENDS: Political devolution within the UK has led to variations in the way services are organised and delivered between the four nations. PRIMARY CARE RESPIRATORY SERVICES IN THE UK: Primary care is the first point of contact with services. Most respiratory conditions are managed here, including prevention, diagnosis, treatment and palliative care. EPIDEMIOLOGY: Respiratory disease accounts for more primary care consultations than any other type of illness, with 24 million consultations annually. ACCESS TO CARE: Equitable access to care is an ongoing challenge: telehealthcare is being tried as a possible solution for monitoring of asthma and COPD. REFERRAL AND ACCESS TO SPECIALIST CARE: Referrals for specialist advice are usually to a secondary care respiratory physician, though respiratory General Practitioners with a Special Interest (GPwSIs) are an option in some localities. CONCLUSIONS: Prevalence of asthma and COPD is high. Asthma services are predominantly nurse-led. Self-management strategies are widely promoted but poorly implemented. COPD is high on the policy agenda with a shift in focus to preventive lung health and longterm condition management.

What YouTube narratives reveal about online support, counseling entrance, and how Black Americans manage depression symptomatology.

This manuscript explores the depression disease management of Black Americans (N = 50) who post their experiences on YouTube. The narratives garnered five themes: (1) personal and national histories as a barrier to treatment and contributor to depression, (2) utilizing the social network as informal counseling and as the catalyst for formal counseling, (3) long-term undiagnosed depression management and mismanagement, (4) advocating to destigmatize and treat depression, and (5) positive experiences initiating and engaging in treatment. Novel findings include how participants discuss narratives in third person, the importance of the Youtube community, and advocacy to destigmatize and treat depression.

Actor-Network Theory and its role in understanding the implementation of information technology developments in healthcare.

BACKGROUND: Actor-Network Theory (ANT) is an increasingly influential, but still deeply contested, approach to understand humans and their interactions with inanimate objects. We argue that health services research, and in particular evaluations of complex IT systems in health service organisations, may benefit from being informed by Actor-Network Theory perspectives. DISCUSSION: Despite some limitations, an Actor-Network Theory-based approach is conceptually useful in helping to appreciate the complexity of reality (including the complexity of organisations) and the active role of technology in this context. This can prove helpful in understanding how social effects are generated as a result of associations between different actors in a network. Of central importance in this respect is that Actor-Network Theory provides a lens through which to view the role of technology in shaping social processes. Attention to this shaping role can contribute to a more holistic appreciation of the complexity of technology introduction in healthcare settings. It can also prove practically useful in providing a theoretically informed approach to sampling (by drawing on informants that are related to the technology in question) and analysis (by providing a conceptual tool and vocabulary that can form the basis for interpretations). We draw on existing empirical work in this area and our ongoing work investigating the integration of electronic health record systems introduced as part of England's National Programme for Information Technology to illustrate salient points. SUMMARY: Actor-Network Theory needs to be used pragmatically with an appreciation of its shortcomings. Our experiences suggest it can be helpful in investigating technology implementations in healthcare settings.

Follow-up survey of general practitioners' perceptions of UK allergy services.

BACKGROUND: A UK survey of general practitioners (GPs) in 2002 found that they perceived allergy care throughout the UK National Health Service (NHS) to be poor. We conducted a follow-up survey in 2009 to see if GPs' perceptions had changed. OBJECTIVES: To determine GP perceptions of allergy care in the NHS in the wake of recent Government reports into allergy care, and to compare the findings of this survey to a similar survey conducted in 2002. METHODS: A cross-sectional postal survey of 500 UK GPs was conducted, using an adapted version of the 2002 questionnaire, modified to reflect recent developments in primary care. RESULTS: We obtained valid responses from 149 GPs, 87% of whom were based in England. 74% were GP principals and 63% worked in training practices. Most GPs (71%; 95%CI 63-79) rated overall NHS allergy care as poor, expressing concern about both primary care and access to allergy specialists. There were no significant differences in GPs' perceptions of the quality of allergy care provided in primary (p=0.33) and secondary care (p=0.97) or access to specialists (p=0.37), between 2002 and 2009. CONCLUSION: This survey suggests that recent professional and parliamentary reviews have not led to any notable improvements in GP perceptions of UK NHS allergy services between 2002 and 2009.

Making sure services deliver for people with advanced heart failure: a longitudinal qualitative study of patients, family carers, and health professionals.

The objective of this study was to evaluate the key components of services for people with advanced heart failure from multiple perspectives and recommend how care might be delivered in line with UK policies on long-term conditions, palliative and end-of-life care. Serial interviews were conducted over 2 years with patients, case-linked family carers and professionals (n =162); followed by four focus groups involving patients, carers and key professionals (n =32). There were 36 patients with advanced heart failure, 30 family carers and 62 professionals included in the study from a UK health region with various heart failure care models. Participants confirmed the value of a key health professional coordinating care, holistic assessment and regular monitoring. A lack of time and resources due to competing priorities in primary care, failure to respond to the fluctuations of a heart failure illness trajectory, concerns about the balance between direct care from specialist nurses or a more advisory role and difficulty in judging when to move towards palliative care hindered consistent access to proactive care. A heart failure care framework, with key stages and service responses, was developed. We conclude that patients with long-term conditions needing palliative care should be identified and managed using pragmatic criteria that include a proactive shift in care goals.

Anaphylaxis management plans for the acute and long-term management of anaphylaxis: a systematic review.

BACKGROUND: Anaphylaxis management plans (AMPs) are increasingly advocated to improve outcomes and reduce the risk of recurrence in persons with anaphylaxis. A recent systematic review investigating their effectiveness failed to identify any randomized controlled trial evidence to guide clinical decision making. OBJECTIVES: We sought to identify and describe available AMPs, assess their acceptability and likely effectiveness, and understand potential facilitators and barriers to their use. METHODS: We performed a systematic review of published, unpublished, and ongoing epidemiologic and qualitative studies, searching 13 international databases and contacting an international panel of anaphylaxis experts. Studies were critically appraised using established international criteria and thematically synthesized. RESULTS: Nineteen of 789 potentially eligible studies identified satisfied our inclusion criteria. A number of AMPs exist, and other than agreement on the central importance of early administration of self-administered epinephrine, there is a range of perspectives on what should be included. AMPs are acceptable to patients/caregivers and might considerably reduce the risk of recurrence. This latter finding needs to be interpreted with caution given the substantial risk of bias in the limited number of intervention studies conducted. Access to specialists, problems with follow-up, and indemnity considerations relating to emergency administration of epinephrine in schools are important structural barriers to their wider use. CONCLUSIONS: There are currently no universally accepted AMPs. The available evidence to support use of self-management plans is encouraging but is, in comparison with other long-term conditions, such as asthma, extremely weak. The effectiveness and cost-effectiveness of AMPs need to be formally evaluated.

What support do parents of young children need? A user-focused study.

Health visiting practice has moved away from surveillance and screening of children to support for parents, especially those assessed as vulnerable. This paper explores parents' perspectives of factors that determine their need for support and the perceived usefulness of the support they receive. Parents of 44 children took part in small group discussions in convenient local venues or individual interviews in their homes. The early days of parenthood appeared particularly problematic for parents. Self-confidence, previous experience of caring for children and an effective social network of family and friends were seen as being essential for successful childrearing. Social isolation was highlighted as the main cause of difficulty. Establishing new social networks appeared important for many parents to learn childrearing skills and as a source of emotional support.

Supporting children and families facing the death of a parent: part 1.

AIM: To present findings from a review of key literature and from a scoping of current provision of support for children facing the death of a parent. A summary of the findings from these is reported here. METHODS: To set out the background and context to the evaluation of a new service aimed at supporting children and families facing the loss of a parent from cancer, key literature was reviewed and a scoping of current bereavement support for children and families was conducted using online searching, telephone and face-to-face communications. FINDINGS: The review processes uncovered a range of national and local bereavement services. Bereavement was reported as a normal life event and part of human experience. Health, education and social services personnel need to respond to individual needs, accepting that not all bereaved children require complex, long-term interventions. CONCLUSIONS: At national and global levels there was recognition that the needs of bereaved children require careful assessment. A complex range of initiatives have been developed across the UK aimed at supporting children facing the death of a family member. The fragmented nature of provision makes it difficult to be comprehensive or all-inclusive when describing service provision in this area.

Supporting children and families facing the death of a parent: part 2.

AIM: To report on the views of children, parents and key stakeholders of a new bereavement support service for families where a parent is dying from cancer. STUDY DESIGN: A qualitative pre- and post-intervention evaluation design was used. Case study methods allowed multiple perspectives to be accessed so broadening the scope of the evaluation. SAMPLE AND SETTING: A purposeful sample of six families was recruited from the community palliative care service. Each case study comprised a family, a health professional and the family support worker. Six key stakeholders also contributed data. METHODS: Data gathering included individual and family group interviews, non-participant observation and interviews with nominated health professionals, key stakeholders and the family support worker. Analysis of pre- and post-intervention data were supported by QSR NVivo. FINDINGS: Children and families with complex and/or enduring needs benefited from the specialist expertise and interventions provided by this service. CONCLUSIONS: Risk assessment procedures should be used to identify need and ensure limited resources are directed appropriately. Many children and families can be supported within the community drawing on their own social networks.

Exploring the concept of need in people with very severe chronic obstructive pulmonary disease: a qualitative study.

BACKGROUND: Despite apparent unmet needs, people with chronic obstructive pulmonary disease (COPD) rarely ask for help. We explored the concept of need from the perspective of patients, their family carers and professionals. METHODS: We recruited inpatients at two National Health Service (NHS) Lothian hospitals to a structured, holistic review of care needs delivered at home by a respiratory nurse 4 weeks postdischarge. Using semistructured interviews and group discussions, review notes and field-notes we explored the views of patients, carers and professionals on perceptions of need and the actions requested. Data were analysed thematically using Bradshaw's classification of need. RESULTS: 14 patients, 3 carers, 28 professionals provided 36 interviews and 2 discussion groups. Few needs were identified by our intervention and few actions planned. Professionals identified 'normative' needs some of which had been addressed during routine discharge planning. Other needs (physical/psychological limitations, social/financial concerns, existential issues) were 'felt' by patients and carers but articulated in response to the researcher's questions rather than actively 'expressed'. Patients often did not wish any action to address the problems, preferring care from family members rather than formal agencies. Many spoke of the over-arching importance of retaining a sense of independence and autonomy, considering themselves as ageing rather than ill. CONCLUSIONS: In contrast to professionally-defined 'normative' needs, patients rarely perceived themselves as needy, accepting their 'felt' needs as the result of a disability to which they had now adapted. Sensitive approaches that foster independence may enable patients to 'express' needs that are amenable to help without disturbing the adaptive equilibrium they have achieved. TRIAL REGISTRATION NUMBER: NCT01650480.