Patient and public voice - full abstract

Health Experiences of Asylum seekers and Refugees (HEAR): findings and recommendations from a survey across Wales

Ashra Khanom(1), Ian Russell(2), Daphne Russell(2), Gill Richardson(3), Lauren Couzens(3), Rebecca Fogarty(3), Helen A Snooks(2)
(1)Swansea University Medical School, (2)Swansea University, (3)Public Health Wales

Background: Numbers of asylum seekers & refugees in the UK have increased recently partly due to the Syrian Vulnerable People’s Resettlement scheme, but we know little of their healthcare experiences. Therefore, we aimed to characterise their experiences of healthcare, especially what helped or hindered their access. 

Methods: We used a cross-sectional national survey across Wales. To access this hard to reach group, we linked with regional support agencies and trained and supported eight researchers from asylum-seeking and refugee communities to administer the survey. Questionnaires were distributed in person, or conducted over the telephone.

Results: We received 210 responses, from 90 known refugees, 89 known asylum seekers, and 11 known to have been refused asylum.  Though 79% reported attending initial health assessment on arrival in Wales, & 94% reported they were currently registered with a general practitioner (GP), but only 35% found it easy or very easy to make an appointment with their GP.  Awareness of other services was mixed: best known was the 999 service, with 77% reporting they could access it.  While 64% reported using healthcare in working hours, 27% reported use out of hours.  Key influences on access to health services  included: knowledge of NHS and how to navigate it; language barriers; and cultural factors.

Implications: Our survey suggests that a compassionate approach to providing care; providing introductory information (in their own language wherever possible) on how to access GP services; and access to interpretation services at all levels of the NHS interaction can improve access, and reduce healthcare inequalities, for asylum seekers and refugees.

Exploring how healthcare staff use online patient feedback in practiceː Ethnographic methods used in three NHS Trusts

Lauren Ramsey(1), Laura Sheard(2), Rebecca Lawton(2), Jane O'Hara(2)
(1)Yorkshire and Humber PSTRC, (2)Yorkshire and Humber Patient Safety Translational Research Centre

Background: Increasingly, patients are reporting about their healthcare experiences online however it is unclear if, or how that information is being used to improve practice. Our previous research identified a typology of responses that staff provide to feedback on Care Opinion, a not for profit online platform where patients provide free-text narrative feedback regarding health and/or social care experiences. Response types include non-responders, generic responders, appreciative responders, offline responders and transparent, conversational responders. Further, NHS Trusts tend to adopt a specific response type(s), suggesting that responding is heavily influenced by organisational culture.

Methods: Using the identified typology as the basis for case selection, three NHS Trusts were recruited. This included a non-responder, a generic responder and an organisation that provided high rates of transparent, conversational responses. Ethnographic methods were used to explore and gain insight into the social and cultural contexts in which healthcare staff did or did not use online patient feedback in practice. This included semi-structured and ad-hoc interviews with staff, observations of practice and documentary analysis of relevant information. Individual case studies were produced and a cross-site analysis was conducted using thematic analysis.

Findings: The transparent and conversational responding organisation highlighted that their 10 year journey of challenge, perseverance and gumption enabled organisational culture and values to be embedded, which they were keen to reflect within responses online. This lead to being placed upon a pedestal, with both internal and external recognition of being the gold-standard, yet learning was ongoing. The organisation that provided generic responses via the communications team did so for multiple reasons, including resource and time constraints leading to a low-cost in-house approach. Further, staff felt that the focus should be on improvement based on known trends in existing data rather than investing in additional mechanisms, a perception that patients preferred traditional communication methods and a sense of risk associated with engaging with patients in a public forum. The non-responder involved staff organisational firefighting large volumes of feedback under pressure, leading to a prioritisation of mechanisms and logging feedback to close cases as quickly as possible. Here anonymity was a roadblock to improvement and staff believed that existing centralised services such as PALS and complaints offered everything that patients needed. The cross-case analysis suggested that response type reflected organisational culture around improvement. Three distinct approaches were identified. Where feedback was recognised as a case, the focus was on listening, resolving and closing individual cases. Where feedback was recognised as data, the focus was logging, counting and reporting. However, where narrative feedback was culturally embedded the focus was on openness, learning and driving meaningful improvement.

Conclusions: Those organisations who value patient feedback and also have the time and resources to invest in responding and improving services may be initially attracted to engaging with Care Opinion. Similarly, engagement may perpetuate that culture, particularly where responsibility is devolved. However, where there are resource and time constraints within the centralised team, and there is a resistance to publically engaging with patients, online feedback may become less of a priority in comparison to more traditional mechanisms. Those aiming to embed narrative feedback within their organisational culture and use it to directly inform service improvement may be able to learn from those who use a transparent, conversational response style on Care Opinion. However, these examples of best practice may have heavily invested time and resources, and worked to engage various stakeholders throughout the organisation in order to achieve the desired culture.


Attendance at cardiac rehabilitation sessions in a group with symptoms of anxiety and/or depression

Gemma Shields(1), Linda Davies(1), Patrick Doherty(2), Lora Capobianco(3), Deborah Buck(1), Adrian Wells(1)
(1)The University of Manchester, (2)The University of York, (3)Greater Manchester Mental Health NHS Foundation Trust

Background: Cardiac rehabilitation (CR) is a supervised programme of care offered to people following a cardiac event, typically incorporating risk factor management, exercise, educational and psychosocial health support. CR is shown to reduce morbidity and mortality in the population as well as improving quality of life and psychological well-being. Evidence suggests CR is generally cost-effective, though this varies with service type. Recent national and international studies indicate the dose of CR is highly variable leading to uncertainty about its effectiveness. This study focuses on CR patients with elevated anxiety and depression symptoms to determine whether patient baseline characteristics were associated with the number of sessions attended.

Methods: This is a sub-study of the PATHWAY Group-MCT randomised controlled trial, which is a NIHR funded multicentre, two-arm, single blind randomised controlled trial that recruited 332 patients across five NHS sites. For this analysis, baseline data on participant characteristics (demographics, socio-economic factors and symptom measures) was used alongside data on attendance at CR usual care. Descriptive statistics and regression analysis models were used to identify key associations and potential causal relationships between attendance and: (i) patient and organisational characteristics; and (ii) three key health measures (Hospital Anxiety and Depression Scale [HADS], Metacognitions Questionnaire 30 [MCQ-30] and the EQ-5D-5L). 

Results: The mean number of cardiac rehabilitation sessions attended was 10 with the mean number of sessions attended varying across hospital sites (range 8 to 12). This is below the national minimum recommendation of 16 sessions (BACPR 2017).  This suggests attendance in our group (with symptoms or anxiety and/or depression defined by HADS) was lower than advised. Women are less likely to attend CR, however, our data demonstrated that there was not a significant difference in attendance by gender. Employment status (full or part-time or unemployed) was not statistically significantly. Depression and anxiety scores and EQ-5D were statistically significantly correlated with CR attendance, though the (Pearson) correlation was weak. Initial linear regression identified that only NHS site was significantly correlated with the number of sessions attended (p<0. 01). 

Implications: This preliminary analysis will be used to inform more complex models as the work progresses. Data suggests that our sample of CR participants with symptoms of anxiety and/or depression attended fewer sessions of CR than recommended, with variation across NHS site. It is not known whether this is due to the programmes offered by sites or other characteristics. The mean number of sessions attended was lowest in the most rural NHS site; alternative home-based CR may improve attendance for these areas. Further research with a larger national sample is needed to more comprehensively identify characteristics linked to CR attendance which may help to guide intervention design to increase attendance and dose of CR in the future.

The baby box scheme in Scotland: a study of public attitudes and social value

Agata Kostrzewa, Zoë Skea, Louise Locock, Mandy Ryan, Mairead Black, Heather Morgan
University of Aberdeen

Background: The Baby Box is a universally available scheme introduced by the Scottish government in August 2017 which aims to tackle deprivation, improve health and support parents as well as to ensure that every baby born in Scotland is given the best possible start in life. The scheme offers all new parents a bundle of babycare items, in a box which can be used for sleeping. Before and after launching the Baby Box scheme, the Scottish Government commissioned several pieces of research in order to review contents of the box and gather parents’ opinions on practical aspects of the scheme. One study included an evaluability assessment which aimed to gather advice from independent experts and identify short and medium term outcomes of the scheme. However, there is little academic research focused specifically on wider long-term social outcomes which the Baby Boxes might have on well-being of parents and their children. In order to increase understanding of the potential wider social benefits of the Baby Boxes, our study aims to investigate how the scheme has been: a) reported within media coverage; b) discussed publicly on various online parental discussion forums and; c) received by a range of parents within the North East of Scotland.


  • Qualitative thematic analysis of news articles related to the scheme. A total of 107 articles published in five national Scottish newspapers of diverse political alignments were included.

  • Series of focus groups with up to 25 parents living in Aberdeen and the surrounding areas who either received a Baby Box, or who were eligible to apply for one but decided not to do so (ongoing).

  • Qualitative thematic analysis of a sample of existing online parenting forums discussions related to the Scottish Baby Boxes (ongoing).

Results: Findings from the analysis of news articles completed to date showed that the scheme has been portrayed in very different ways depending on the given newspaper’s political alignment. The main themes arising from the thematic analysis included controversies over the impact which the Baby Boxes might have on reducing infant mortality; concerns about safety of the cardboard boxes; debates on whether the scheme should be available universally or means-tested; and discussions related to the pledge of giving all children in Scotland ‘the best start in life’ by introducing the scheme. Whilst some articles described the Baby Boxes as an ‘expensive, unhelpful stunt’, ‘election gimmick’ or ‘vanity project’, others believed it was a ‘boost for equality’, ‘practical support package’, that it was ‘helping raise awareness of safe sleeping practices", and it was ‘becoming part of the national psyche in Scotland’. Findings from the focus groups and forum analysis will be available by the time of the conference and will be reported in the presentation. These will explore the extent to which parents see baby boxes as a marker of social cohesion, state care and useful practical support - or rather unwelcome state intrusion into and surveillance of private lives.

Implications: By combining thematic analyses of news articles, online discussion forum threads and focus groups with parents, the study will allow us to gain deeper understanding of the public’s perception of the Scottish Baby Box scheme. However, rigorous longer term studies of impact are required to fully evaluate the scheme and its potential wider social impact. It is anticipated that the results from this study will complement and extend the existing emerging evidence base related to the impact of the introduction of baby boxes within NHS Grampian and beyond. The results will also inform a wider health economics study to design better measures of social impact for public health interventions. 


Responses to nuisance bleeding and medication concerns when on Dual Antiplatelet Therapy

Christalla Pithara(1), Maria Pufulete(2), Thomas Johnson(3), Sabi Redwood(1)
(1)NIHR ARC West, (2)University of Bristol, (3)University of Bristol / Bristol Heart Institute

Background: Dual Anti-Platelet Therapy (DAPT) is prescribed for 12 months to all people who are diagnosed with acute coronary syndrome (ACS) (heart attack or unstable angina) or undergo coronary interventions (percutaneous coronary intervention, PCI; and coronary artery bypass grafting, CABG). An adverse side effect of DAPT is bleeding, including nuisance bleeding such as nosebleeds, bleeding from gums and excessive bruising. Nuisance bleeding may influence quality of life and lead to premature discontinuation of treatment; however, adherence to DAPT is crucial for preventing a second heart attack. Few studies have focused on patient experiences with nuisance bleeding when on DAPT, and little is known of patients’ attitudes towards adherence, their contact with healthcare professionals because of nuisance bleeding, and the outcome of such interactions.
The aim of this qualitative study was to understand (1) patient perspectives on adherence and nuisance bleeding when on DAPT, (2) help-seeking behaviours such as seeking information and accessing care, and (3) the outcome of DAPT-related patient-provider interactions. 

Methods: This study took place in the South West of England. Post-coronary intervention (CABG or PCI) and pharmacotherapy only patients were invited to attend one of four focus group discussions: two with patients at the start (0-3 months) and two with patients coming to the end (9-12 months) of their DAPT treatment.
Individual semi-structured interviews with cardiologists, cardiac surgeons and general practitioners were conducted in parallel to explore clinician perspectives on DAPT prescribing and prescribing decisions in the context of nuisance bleeding.
Recordings were transcribed verbatim, anonymised, and analysed using framework analysis. 

Results: Twenty-one patients (post-PCI, post-CABG, or pharmacotherapy only) attended the focus groups: nine were at the early stages (0-3 months), and 12 at the end (9-12 months) of their treatment. Only one woman attended the focus groups. The average age of participants was 66 years.
Six cardiac surgeons, six cardiologists and five GPs were interviewed over the phone or face-to-face.
For both patients and clinicians, being informed about the risk for nuisance bleeding, the importance of DAPT for reducing ischemic risk, and awareness of the short-term nature of treatment encouraged adherence and continuation with treatment. In patient narratives adherence and help-seeking behaviours were impacted on by (1) participants’ beliefs about their illness and treatment; (2) access to family support; and (3) perceived quality of care and care pathways, including timely and appropriate access to specialist care and medication counselling.
Clinician and patient narratives suggested patients rarely access medical care because of nuisance bleeding, and concerns with side effects and medications would most often be addressed by general practice. General practitioners saw themselves as generalists, and when faced with nuisance bleeding would not discontinue medication or make changes without guidance from a specialist. Patients recounting consultations with general practitioners reported frustration when their expectations of the outcome of the consultation were not met and would prefer direct access to specialists. 

Implications: Findings indicate the crucial role of family-centred medication counselling at different stages in the patients’ treatment journey to address the dynamic and shifting nature of information needs between the time of diagnosis and surgical and/or pharmacotherapeutic intervention, and discharge into the community. The experiences of general practitioners and patients with DAPT medication management should be explored further to identify gaps in care and support needs.


Why do patients take part in research and how can recruitment barriers be overcome? An overview of systematic reviews.

Peter Knapp(1), Rebecca Sheridan(1), Jacqueline Martin-Kerry(1), Peter Bower(2), Joanna Hudson(3), Adwoa Parker(1)
(1)University of York, (2)University of Manchester, (3)Kings College London

Research is essential to the development of improved health care; however the recruitment of participants remains low (1-3). This is a particular problem for randomised trials which test the effectiveness of interventions aimed at prevention, diagnosis, screening or treatment (4). Suboptimal recruitment can result in underpowered and inconclusive studies, increased research costs and delay, and unrepresentative sampling (1, 4). A recent James Lind Alliance Priority Setting Partnership concluded that one of the most pressing research recruitment questions was what motivates participation (5).

Understanding why people take part in health research is critical to improve research efficiency and generalisability. The challenges experienced in recruitment have stimulated the production of a wide range of interventions to increase recruitment rates. Often these have been evaluated within SWATs (Study Within A Trial), using trial methods to provide rigorous evidence of impact. For recruitment to trials, SWATs have been meta-analysed by Treweek et al (2018); for recruitment to health research more generally, a systematic review was last undertaken in 2007 (6). Notable in the Treweek review was that despite a significant number of embedded trials (n=68) and a range of intervention types (n=72), in many cases there was no clear link between the tested intervention and reasons underpinning decisions to take part (4).

In this overview of systematic reviews we identified psychosocial determinants of research participation and mapped them to psychological theory and empirical recruitment research, to identify effective strategies to increase research participation.

Methods: Qualitative and quantitative systematic reviews were systematically identified through searching eight indexed databases and PROSPERO. No date or language limits were applied. Two reviewers independently selected reviews. Methodological quality was rated using AMSTAR and poor quality reviews were excluded.  Barriers and facilitators were coded to psychological theory (Theoretical Domains Framework) (7) and empirical recruitment research (recruitment interventions that had been subjected to randomised controlled trial evaluation and were included in Treweek et al (4)).

Results: We included 26 systematic reviews (429 unique primary studies), covering a wide range of patient populations and health settings. We identified five groups of facilitators, of which three were dominant (potential for personal benefit; altruism; trust) and which appear to be relevant across research setting and design. We identified nine groups of barriers, which varied according to the particular study (context, population and design). Two determinants (participant information; social influences) could be both barriers and facilitators. There was some overlap between psychosocial determinants and empirical recruitment research (SWATs), but some barriers and facilitators had not been tested at all.  Barriers and facilitators could be coded to the Motivation and Opportunity components of the Theoretical Domains Framework; only one was coded to a Capability component.

Implications: Identifying effective recruitment strategies could increase the efficiency and generalisability of primary research. We identified a core set of barriers and facilitators that could be addressed by researchers. There is a need for more research to identify effective recruitment strategies that draw on the psychosocial facilitators and barriers identified in this overview.


  1. McDonald AM, et al. Trials. 2006. 7(1):9.

  2. Briel M, et al. Journal of Clinical Epidemiology. 2016. 1(80):8-15.

  3. Walters SJ, et al. BMJ Open. 2017. 7(3):e015276.

  4. Treweek S, et al. Cochrane Database Syst Rev. 2018. (2):Mr000013.

  5. Healy P, et al. Trials. 2018. 19(1):147.

  6. Mapstone J, et al. Cochrane Database Syst Rev. 2007. (2):Mr000013.

  7. Atkins L, et al. Implementation Science : IS. 2017. 12(1):77.

Community pharmacy customer attitudes towards mental health support from community pharmacies.

Franziska Stoeckel(1), Tracey Thornley(2), Claire Anderson(1), Helen Boardman(1), Matthew J Boyd(1)
(1)University of Nottingham, (2)University of Nottingham, Boots UK, Nottingham

Background: Mental health problems such as depression and anxiety, are widely recognised as leading causes of ill health in England. Recommendations for pharmacists' increased involvement in providing assistance for patients with mental health issues have been published by the Royal Pharmaceutical Society (Royal Pharmaceutical Society England, 2018). However, little information about the attitudes of community pharmacy customers themselves regarding mental health service provision in this setting are available.

Method: A questionnaire assessing attitudes towards mental health services by customers of community pharmacies was developed. Questions were tested for face and content validity. The questionnaire was administered from 4th-23rd March 2019 across 12 different pharmacies in an area of England. 24 pharmacy students actively approached pharmacy customers who appeared 18 years old and above to participate in the study. Most questions required response using a 5 point Likert scale, with additional questions using multiple choice and free-text responses. Following data collection, data were entered into the PharmOutcomes online software and a sample verified for accuracy (36.9%). Data were then imported into SPSS version 26 for statistical analysis. Descriptive statistical methods, including frequency counts and percentages, were used to describe participant’s attitudes towards mental health service provision in community pharmacy. Chi Square tests were used to explore associations. Ethical approval for the study was granted by the University of Nottingham School of Pharmacy Research Ethics Committee (Ref: 023-2017er).

Results: 3449 of 6905 customers approached agreed to participate in the survey (49.95%). 70.0% (n=2416) of participants were female, and almost half (45.1%) were less than 50 years old. The majority (n=2080, 60.3%) reported that they were in the pharmacy they normally use. When asked whether community pharmacists should do more to assist patients with mental health issues 1279 participants (37.1%) reported agreement, 21.0% (n=723) disagreed. Almost one-quarter of participants (n=856) agreed with community pharmacists being well placed to identify patients with mental health issues. Customers were also asked whether they would consult a community pharmacist first when having a mental health issue; 10% (n=344) of participants reported they would. However, 37% (n=1275) of customers reported that if they did have a mental health issue they would consult a pharmacist in addition to consulting another health professional such as a General Practitioner (GP). Chi-square tests highlighted relationships between participants’ age group and attitudes towards mental health services. Participants younger than 65 years old were found to be less likely to agree with community pharmacists being well placed to identify patients with mental health issues compared to participants 65 years of age and above (p< 0.001).

Implications: In general, participants were found to be accepting of community pharmacists doing more to assist patients with mental health issues but reported to be reluctant towards community pharmacists identifying patients with mental health issues or looking for advice from community pharmacists as the first port of call when encountering a mental health issue. This survey did not allow us to explore other factors which might have had an impact on participants’ attitude, for example whether or not personally experiencing a mental health issue or having a family member experiencing mental health issues shaped expressed views. Similarly, previous experiences with community pharmacy services were not exhaustively investigated but might explain the findings regarding over 65s. Further exploration of factors which prevent or encourage community pharmacy customers to utilise mental health services in community pharmacy is necessary.

ROYAL PHARMACEUTICAL SOCIETY ENGLAND 2018. No health without mental health: How can pharmacy support people with mental health problems?


Patient-initiated second medical opinions: characteristics, impact and cost-effectiveness

Liora Shmueli(1), Geva Greenfield(2), Amy Harvey(2), Nadav Davidovitch(3), Azeem Majeed(2), Benedict Hayhoe(2), Joseph Pliskin(3)
(1)Bar-Ilan university, (2)Imperial College London, (3)Ben-Gurion University of the Negev

Background: Second medical opinion is common decision-making tool, mostly initiated by patients seeking an additional opinion on a diagnosis, treatment or prognosis. Mandatory second medical opinions are used in some health systems to limit costs, by reducing provision of unnecessary or ineffective medical treatments. The impact and cost-effectiveness of patient-initiated second opinions across general medical care have not been rigorously examined. 

Methods: A systematic literature review was carried out using the electronic databases Embase, Medline, PsycINFO and HMIC. Search terms related to ‘second opinion’ and ‘patient’.

Relevance/impact: Although there is no right to a second medical opinion in the NHS, GPs will often refer at a patient’s request. In the context of rising pressure on primary and secondary care services, it is important to understand why patients initiate second opinions, the impact on quality of care, satisfaction with care, inequalities, and the cost-effectiveness of granting these requests. 

Results: 31 articles were included in the review. 27 considered patient characteristics, 18 patient motivating factors, 10 patient satisfaction, and 17 clinical agreement. No studies reported on cost-effectiveness. In many cases, second opinions confirm the original diagnosis or treatment recommendation, but this varies by specialty. Discrepancies have greater impact in patients with cancer. Most patients are satisfied with the second opinion they receive.

Discussion: Research is needed to examine cost-effectiveness of second opinions, and to identify patient groups that are likely to benefit from second opinions. For these patients, strategies to facilitate optimal use of second opinions should be developed.

Being well and well-being in the context of prostate cancer and creating a new quality of life questionnaire by, and for, persons affected by prostate cancer

David Matheson(1), Catherine Matheson-Monnet(2)
(1)University of Wolverhampton, (2)University of Southampton

Background: The main presenter, DM, was diagnosed with locally advanced, high-risk prostate cancer in 2012 and relapsed from January 2018. In 2019, he learned that his disease had spread, and he has received treatment for this. Throughout his treatment journey, he has been supported by the co-presenter, CMM.

As persons affected by prostate cancer, they became concerned that the current quality of life questionnaire used for patients with prostate cancer [EORTC QLQ-PR25] does not always ask the right questions and that it makes all sorts of assumptions about what it is like to have the disease. A new questionnaire was needed, but it needs to be designed and created with persons affected by prostate cancer. It needs to reflect just what concerns patients, and it needs to ask the kind of questions patients and those close to them would like to be asked.


Our project aims to:

  1. Examine the notions of being well and well-being mean in the context of prostate cancer to those affected by prostate cancer, whether patients or those close to them;

  2. Find out the questions that patients and those close to them would like to be asked;

  3. Work with patients and those close to them to design and pilot a quality of life questionnaire derived from patients’ experiences and concerns

  4. Use this work to develop materials to help healthcare professionals ask the right quality of life questions (as determined patients and those close to them)


This is a mixed-method study, incorporating both quantitative and qualitative elements.


The first phase of the research consists of a short anonymous survey to be completed online. The second phase is interviews to further interrogate key themes emergent from phase one.


As the questionnaire is anonymous, responses cannot be attributed to individuals and all raw data will be treated as confidential to within the limits defined by law.


The survey questionnaire is a mix of open and closed questions, taking less than ten minutes to complete. The interviews last around 30 minutes or so. The target group for this research consists of anyone affected by prostate cancer, be they patient, former patient or person close to a patient or former patient.


In parallel, text mining has been used to examine how being well and well-being in the context of prostate cancer are discussed or defined in social media, such as Facebook and Twitter.


Results: To date, we have found a general dissatisfaction among persons affected by prostate cancer insofar as they are seldom asked anything meaningful with regard to the patient's quality of life.


This is work in progress and further results will be presented at the conference.


Implications: In patient-centred care, it makes sense that patients and those close to them are involved in the co-creation of quality of life questionnaires and that notions of being well and of wellness are defined with respect to, and by, these persons. Such an approach serves not only to empower patients and those close to them by rendering QoL questionnaires and questions meaningful to them, it also empowers clinicians to ask the right questions.


Cyclical variation of patient reported outcomes: a conceptual model

Antoinette Davey, Ian Porter, Avril Mewse, Colin Green, Jose Valderas
University of Exeter

Background: Patient reported outcomes measurements (PROMs) are instruments collecting health outcomes, such as quality of life or functional status, directly reported by an individual without an interpretation of the response by a clinician or someone else. PROMs require individuals to reflect and evaluate their experience of their health condition over different periods of time, relying on their recall. For patients with chronic conditions recall is problematic as symptoms are known to fluctuate over time. Although diurnal patterning of symptoms has been documented in the biological literature and the timing of the day has been recognised as important for certain conditions, there has been a lack of literature examining the patterns in patient reported outcomes.  

Methods: A review of the literature was conducted by carrying out an initial scoping review on cyclical variation of PROs. In addition, existing models of health outcomes were integrated in the conceptual framework, based on the models by Wilson and Cleary and Valderas and Alonso. A longitudinal mixed methods study was carried out with patients with different chronic conditions to integrate the patients’ narrative into the model. Finally, other literature on the patient experience of chronic conditions and other theoretical models explaining this was considered during the development of the conceptual model.

Results: The appraisal of health was influenced by several factors including individual factors (demographics, identity, resilience, locus of control, values and preferences), environmental factors which had two separate distinctions: social and physical (further layered into human and natural), biological rhythms (specific to the conditions experienced), constructs (as measured by PROMs including symptom status, health related quality of life, functional status, and general health perceptions), co-morbidities, a recent salient episode (e.g. exacerbation or adverse event), current medication and how patients view their current situation in relation to their chronic condition (based on the sociological literature on chronic illness). These factors impact on not only how patients recall their experience of their condition but also on their current psychological status. The influence of time, whether that be time of day, week, month or year, affects several of the factors in different ways, e.g. symptom severity will be different across a 24-hour period). 

Implications: This area of work poses potential questions regarding how timing of administration can affect scores and how variability of scores should be interpreted. The proposed conceptual provides an understanding and stresses the importance of the factors involved in cyclical variation of PROs for clinicians and researchers when using PROMs in clinical practice for the management and monitoring of chronic conditions.


Exploring the variation of patient-reported outcome scores across different time-points (day, week, month) for patients with multiple conditions

Antoinette Davey(1), Ian Porter(2), Avril Mewse(1), Colin Green(2), Jose Valderas(2)
(1)University of Exeter, (2)University of Exeter Medical School

Background: The effect of the timing of administration or completion of patient-reported outcome measurements (PROMs) has not been studied in detail, despite evidence of rhythmic fluctuations of symptoms people with chronic conditions experience (Smolensky et al 1999). Such fluctuations in symptoms can influence response to diagnostic tests and therapeutic interventions (Buttgereit et al 2015). An initial scoping review confirmed cyclical variation in PRO scores across different chronic conditions, although there was a lack of qualitative research exploring explanations in the variations. The aim of this study was to explore in depth whether PRO scores varied across different time intervals for chronic conditions, how they varied and what impacted on the variation from the patients’ perspective

Methods: This was a mixed methods, longitudinal study spanning 9 months recruiting patients from primary care settings, diagnosed with 2 or more of the following conditions: asthma, depression and/or osteoarthritis. Participants were asked to complete paper/electronic generic and disease-specific PROMs (AQLQ, WOMAC, PHQ-9) a week prior to their interview. Interviews focused on their PRO scores, factors influencing their scoring, and what external (socially determined) and internal (mood, cognitive function) factors could impact on how they report their symptoms. Framework analysis was conducted to examine the common themes across the three timepoints for these conditions, using a pre-defined conceptual model to base the coding framework on.  

Results: A total of 16 patients with varying co-morbidities of asthma, osteoarthritis and depression were recruited and monitored over the 9 month period. Results indicated that fluctuations of PRO scores on disease-specific PROMs occur at different times of the day, with pain/stiffness for osteoarthritis patients at its worst in the morning and evening, asthma symptoms and depressive symptoms worse in the morning. Disease-specific biorhythms and the timing of medication/interventions had an effect on patient reported outcomes. Participants' experience of their health condition was influenced by both external factors (e.g. what activities they were involved with, weather conditions) and individual factors (personality - resilience, co-morbidities). Psychological status mediated how individuals recalled their health condition experience which impacted on PRO scores.  

Implications: Day-to-day fluctuations may be important to patients in managing their condition and improving their quality of life, thus should not be overlooked by clinicians who generally focus on persistent symptoms at the time of patient consultations. Fluctuating patient reported outcomes reported by patients could have a bearing on the evaluation of treatment plans and disease progression.

A longitudinal qualitative study of women’s experiences of care following hypertensive disorders of pregnancy: Findings from the PEONY study

Sergio A. Silverio(1), Amanda Bye(2), Yan-Shing Chang(3), Debra Bick(4)
(1)King's College London, (2)Department of Psychological Medicine, King’s College London, (3)Department of Child and Family Health, King’s College London, (4)Warwick Clinical Trials Unit, University of Warwick

Background: Hypertensive disorders of pregnancy [HDP] are common, affecting approximately 5-10% of women (NICE, 2019) and include gestational hypertension, chronic hypertension, pre-eclampsia, eclampsia, and eclampsia imposed on chronic hypertension.  HDP are severe health problems and are a concerning morbidity during pregnancy, but can have long-term health implications and risk of recurrence in subsequent pregnancies (Kayem et al., 2011).  Furthermore, HDP are also a leading cause of direct maternal deaths globally (Say et al., 2014).  Internationally, there is little agreement or consensus on HDP diagnosis (Cairns et al., 2016), and literature has traditionally focused on management of HDP during pregnancy (Magee & von Dadelszen, 2013).  More recent trends in the literature base see a shift in empirical focus to postnatal management of HDP.  This is the first study to explore in-depth the views and experiences of a group of UK women of postnatal care received for HDP, their awareness of relevant NICE guidance and barriers and facilitators to seeking healthcare in the postnatal period.

Method: We employed a longitudinal qualitative study using semi-structured interviews with twenty-four women who had been diagnosed hypertensive disorders of pregnancy.  Fifteen women were diagnosed with pre-eclampsia (including one with postpartum pre-eclampsia); seven had chronic hypertension; and two had pregnancy-induced hypertension.  Women were recruited using a maximum variation, purposive sample (Coyne, 1997; Higginbottom, 2004) from across Four South London National Health Service Trusts.  Interviews were conducted at four- and twelve-months postnatally.  Data were managed using NVivo software and thematic analysis was used for coding and theme generation (see Braun & Clarke, 2006; 2013).  The analysis was inductive and consultative (Terry et al., 2017), with discrepancies resolved amongst the team (Silverio et al., 2019), which culminated in theme saturation being achieved (Vasileiou et al., 2018).

Results: Five main themes were identified: Assumptions about Normal Blood Pressure; Perinatal Experiences; Postnatal Care Pathways; Managing Complex Health Conditions; and Women Responsible for their Own Care.  Each theme had various sub-themes. Women’s postnatal care has long-term health and wellbeing effects; on outcomes of future pregnancies and life-course health.  Women’s adherence to medical advice can be influenced by those from whom they are receiving care. Women with pregnancy-related hypertensive disorders are not only vulnerable in terms of physical health but carry a psycho-emotional burden of the diagnosis and concern about how they are being supported and medically managed, all of which must be recognised and addressed as part of postnatal care.  Attention should be paid to if/how clinicians are implementing NICE guidelines and more focus should be placed on planning and  content of postnatal care.  Furthermore, clinicians require greater awareness of what the implications of HDP are on women’s long-term health.  

Implications: This study provides important insight into the psycho-emotional issues women with HDP experienced postpartum and NICE guidance implementation. Better postnatal planning could improve health outcomes and experiences for women diagnosed with pregnancy-related hypertensive disorders, with potential to enhance outcomes of subsequent pregnancies and health over their life-course.