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1.  Breast cancer risk reduction - is it feasible to initiate a randomised controlled trial of a lifestyle intervention programme (ActWell) within a national breast screening programme? 
Background
Breast cancer is the most commonly diagnosed cancer and the second cause of cancer deaths amongst women in the UK. The incidence of the disease is increasing and is highest in women from least deprived areas. It is estimated that around 42% of the disease in post-menopausal women could be prevented by increased physical activity and reductions in alcohol intake and body fatness. Breast cancer control endeavours focus on national screening programmes but these do not include communications or interventions for risk reduction.
This study aimed to assess the feasibility of delivery, indicative effects and acceptability of a lifestyle intervention programme initiated within the NHS Scottish Breast Screening Programme (NHSSBSP).
Methods
A 1:1 randomised controlled trial (RCT) of the 3 month ActWell programme (focussing on body weight, physical activity and alcohol) versus usual care conducted in two NHSSBSP sites between June 2013 and January 2014. Feasibility assessments included recruitment, retention, and fidelity to protocol. Indicative outcomes were measured at baseline and 3 month follow-up (body weight, waist circumference, eating and alcohol habits and physical activity). At study end, a questionnaire assessed participant satisfaction and qualitative interviews elicited women’s, coaches, and radiographers’ experiences. Statistical analysis used Chi squared tests for comparisons in proportions and paired t tests for comparisons of means. Linear regression analyses were performed, adjusted for baseline values, with group allocation as a fixed effect.
Results
A pre-set recruitment target of 80 women was achieved within 12 weeks and 65 (81%) participants (29 intervention, 36 control) completed 3 month assessments. Mean age was 58 ± 5.6 years, mean BMI was 29.2 ± 7.0 kg/m2 and many (44%) reported a family history of breast cancer.
The primary analysis (baseline body weight adjusted) showed a significant between group difference favouring the intervention group of 2.04 kg (95% CI −3.24 kg to −0.85 kg). Significant, favourable between group differences were also detected for BMI, waist circumference, physical activity and sitting time. Women rated the programme highly and 70% said they would recommend it to others.
Conclusions
Recruitment, retention, indicative results and participant acceptability support the development of a definitive RCT to measure long term effects.
Trial registration
The trial was registered with Current Controlled Trials (ISRCTN56223933).
Electronic supplementary material
The online version of this article (doi:10.1186/s12966-014-0156-2) contains supplementary material, which is available to authorized users.
doi:10.1186/s12966-014-0156-2
PMCID: PMC4304617  PMID: 25516158
Breast cancer; Physical activity; Body weight; Alcohol; Sedentary time
2.  The influence of socioeconomic deprivation on multimorbidity at different ages: a cross-sectional study 
The British Journal of General Practice  2014;64(624):e440-e447.
Background
Multimorbidity occurs at a younger age in individuals in areas of high socioeconomic deprivation but little is known about the ‘typology’ of multimorbidity in different age groups and its association with socioeconomic status.
Aim
To characterise multimorbidity type and most common conditions in a large nationally representative primary care dataset in terms of age and deprivation.
Design and setting
Cross-sectional analysis of 1 272 685 adults in Scotland.
Method
Multimorbidity type of participants (physical-only, mental-only, mixed physical, and mental) and most common conditions were analysed according to age and deprivation.
Results
Multimorbidity increased with age, ranging from 8.1% in those aged 25–34 to 76.1% for those aged ≥75 years. Physical-only (56% of all multimorbidity) was the most common type of multimorbidity in those aged ≥55 years, and did not vary substantially with deprivation. Mental-only was uncommon (4% of all multimorbidity), whereas mixed physical and mental (40% of all multimorbidity) was the most common type of multimorbidity in those aged <55 years and was two- to threefold more common in the most deprived compared with the least deprived in most age groups. Ten conditions (seven physical and three mental) accounted for the top five most common conditions in people with multimorbidity in all age groups. Depression and pain featured in the top five conditions across all age groups. Deprivation was associated with a higher prevalence of depression, drugs misuse, anxiety, dyspepsia, pain, coronary heart disease, and diabetes in multimorbid patients at different ages.
Conclusion
Mixed physical and mental multimorbidity is common across the life-span and is exacerbated by deprivation from early adulthood onwards.
doi:10.3399/bjgp14X680545
PMCID: PMC4073730  PMID: 24982497
chronic disease; mental health; multimorbidity; primary health care; socioeconomic status
3.  A Randomized trial of an Asthma Internet Self-management Intervention (RAISIN): study protocol for a randomized controlled trial 
Trials  2014;15:185.
Background
The financial costs associated with asthma care continue to increase while care remains suboptimal. Promoting optimal self-management, including the use of asthma action plans, along with regular health professional review has been shown to be an effective strategy and is recommended in asthma guidelines internationally. Despite evidence of benefit, guided self-management remains underused, however the potential for online resources to promote self-management behaviors is gaining increasing recognition. The aim of this paper is to describe the protocol for a pilot evaluation of a website ‘Living well with asthma’ which has been developed with the aim of promoting self-management behaviors shown to improve outcomes.
Methods/Design
The study is a parallel randomized controlled trial, where adults with asthma are randomly assigned to either access to the website for 12 weeks, or usual asthma care for 12 weeks (followed by access to the website if desired). Individuals are included if they are over 16-years-old, have a diagnosis of asthma with an Asthma Control Questionnaire (ACQ) score of greater than, or equal to 1, and have access to the internet. Primary outcomes for this evaluation include recruitment and retention rates, changes at 12 weeks from baseline for both ACQ and Asthma Quality of Life Questionnaire (AQLQ) scores, and quantitative data describing website usage (number of times logged on, length of time logged on, number of times individual pages looked at, and for how long). Secondary outcomes include clinical outcomes (medication use, health services use, lung function) and patient reported outcomes (including adherence, patient activation measures, and health status).
Discussion
Piloting of complex interventions is considered best practice and will maximise the potential of any future large-scale randomized controlled trial to successfully recruit and be able to report on necessary outcomes. Here we will provide results across a range of outcomes which will provide estimates of efficacy to inform the design of a future full-scale randomized controlled trial of the ‘Living well with asthma’ website.
Trial registration
This trial is registered with Current Controlled Trials ISRCTN78556552 on 18/06/13.
doi:10.1186/1745-6215-15-185
PMCID: PMC4055289  PMID: 24884722
Asthma; Self-management; Adherence; E-health; Randomized controlled trial; Complex intervention; Inhaled corticosteroids; Behaviour change
4.  Treatment non-adherence in pediatric long-term medical conditions: systematic review and synthesis of qualitative studies of caregivers’ views 
BMC Pediatrics  2014;14:63.
Background
Non-adherence to prescribed treatments is the primary cause of treatment failure in pediatric long-term conditions. Greater understanding of parents and caregivers’ reasons for non-adherence can help to address this problem and improve outcomes for children with long-term conditions.
Methods
We carried out a systematic review and thematic synthesis of qualitative studies. Medline, Embase, Cinahl and PsycInfo were searched for relevant studies published in English and German between 1996 and 2011. Papers were included if they contained qualitative data, for example from interviews or focus groups, reporting the views of parents and caregivers of children with a range of long-term conditions on their treatment adherence. Papers were quality assessed and analysed using thematic synthesis.
Results
Nineteen papers were included reporting 17 studies with caregivers from 423 households in five countries. Long-term conditions included; asthma, cystic fibrosis, HIV, diabetes and juvenile arthritis. Across all conditions caregivers were making on-going attempts to balance competing concerns about the treatment (such as perceived effectiveness or fear of side effects) with the condition itself (for instance perceived long-term threat to child). Although the barriers to implementing treatment regimens varied across the different conditions (including complexity and time-consuming nature of treatments, un-palatability and side-effects of medications), it was clear that caregivers worked hard to overcome these day-to-day challenges and to deal with child resistance to treatments. Yet, carers reported that strict treatment adherence, which is expected by health professionals, could threaten their priorities around preserving family relationships and providing a ‘normal life’ for their child and any siblings.
Conclusions
Treatment adherence in long-term pediatric conditions is a complex issue which needs to be seen in the context of caregivers balancing the everyday needs of the child within everyday family life. Health professionals may be able to help caregivers respond positively to the challenge of treatment adherence for long-term conditions by simplifying treatment regimens to minimise impact on family life and being aware of difficulties around child resistance and supportive of strategies to attempt to overcome this. Caregivers would also welcome help with communicating with children about treatment goals.
doi:10.1186/1471-2431-14-63
PMCID: PMC3984727  PMID: 24593304
Qualitative research; Qualitative synthesis; Child health; Medication adherence; Long-term conditions; Caregivers
5.  Digital Asthma Self-Management Interventions: A Systematic Review 
Background
Many people with asthma tolerate symptoms and lifestyle limitations unnecessarily by not utilizing proven therapies. Better support for self-management is known to improve asthma control, and increasingly the Internet and other digital media are being used to deliver that support.
Objective
Our goal was to summarize current knowledge, evidenced through existing systematic reviews, of the effectiveness and implementation of digital self-management support for adults and children with asthma and to examine what features help or hinder the use of these programs.
Methods
A comprehensive search strategy combined 3 facets of search terms: (1) online technology, (2) asthma, and (3) self-management/behavior change/patient experience. We undertook searches of 14 databases, and reference and citation searching. We included qualitative and quantitative systematic reviews about online or computerized interventions facilitating self-management. Title, abstract, full paper screening, and quality appraisal were performed by two researchers independently. Data extraction was undertaken using standardized forms.
Results
A total of 3810 unique papers were identified. Twenty-nine systematic reviews met inclusion criteria: the majority were from the United States (n=12), the rest from United Kingdom (n=6), Canada (n=3), Portugal (n=2), and Australia, France, Spain, Norway, Taiwan, and Greece (1 each). Only 10 systematic reviews fulfilled pre-determined quality standards, describing 19 clinical trials. Interventions were heterogeneous: duration of interventions ranging from single use, to 24-hour access for 12 months, and incorporating varying degrees of health professional involvement. Dropout rates ranged from 5-23%. Four RCTs were aimed at adults (overall range 3-65 years). Participants were inadequately described: socioeconomic status 0/19, ethnicity 6/19, and gender 15/19. No qualitative systematic reviews were included. Meta-analysis was not attempted due to heterogeneity and inadequate information provision within reviews. There was no evidence of harm from digital interventions. All RCTs that examined knowledge (n=2) and activity limitation (n=2) showed improvement in the intervention group. Digital interventions improved markers of self care (5/6), quality of life (4/7), and medication use (2/3). Effects on symptoms (6/12) and school absences (2/4) were equivocal, with no evidence of overall benefits on lung function (2/6), or health service use (2/15). No specific data on economic analyses were provided. Intervention descriptions were generally brief making it impossible to identify which specific “ingredients” of interventions contribute most to improving outcomes.
Conclusions
Digital self-management interventions show promise, with evidence of beneficial effects on some outcomes. There is no evidence about utility in those over 65 years and no information about socioeconomic status of participants, making understanding the “reach” of such interventions difficult. Digital interventions are poorly described within reviews, with insufficient information about barriers and facilitators to their uptake and utilization. To address these gaps, a detailed quantitative systematic review of digital asthma interventions and an examination of the primary qualitative literature are warranted, as well as greater emphasis on economic analysis within trials.
doi:10.2196/jmir.2814
PMCID: PMC3958674  PMID: 24550161
asthma; self-management; Internet; eHealth; systematic review; patient education
6.  Do weight management programmes delivered at professional football clubs attract and engage high risk men? A mixed-methods study 
BMC Public Health  2014;14:50.
Background
The prevalence of obesity in men in the UK is amongst the highest in Europe but men are less likely than women to use existing weight loss programmes. Developing weight management programmes which are appealing and acceptable to men is a public health priority. Football Fans in Training (FFIT), a men-only weight management programme delivered to groups of men at top professional football clubs, encourages men to lose weight by working with, not against, cultural ideals of masculinity. To inform further development of interventions in football club settings, the current study explored who is attracted to FFIT and why overweight/obese men choose to take part.
Methods
A mixed-methods study analysing baseline data on 747 men aged 35–65 years with BMI ≥ 28 kg/m2 who were participants in a randomised controlled trial of FFIT, and data from 13 focus group discussions with 63 men who had attended the programme.
Results
Objectively-measured mean body mass index was 35.3 kg/m2 (sd 4.9). Overall over 90% of participants were at very high or extremely high risk of future ill-health. Around three-quarters of participants in all age groups were at ‘very high’ risk of type 2 diabetes, hypertension and cardiovascular disease (72%, 73% and 80% of men aged 35–44, 45–54 and 55–64 years respectively). A further 21%, 16% and 13% were at ‘extremely high’ risk. Qualitative data revealed that the powerful ‘draw’ of the football club attracted men otherwise reluctant to attend existing weight management programmes. The location and style of delivery of early FFIT sessions fostered team spirit; men appreciated being with others ‘like them’ and the opportunity to undertake weight management in circumstances that enhanced physical and symbolic proximity to something they valued highly, the football club.
Conclusions
The delivery of a weight management intervention via professional football clubs attracted men at high risk of ill-health. The setting enabled men to join a weight management programme in circumstances that felt ‘right’ rather than threatening to themselves as men. FFIT is an example of how to facilitate health promotion activities in a way that is consistent with, rather than challenging to, common ideals of masculinity.
doi:10.1186/1471-2458-14-50
PMCID: PMC4028855  PMID: 24443845
Obesity; Weight management; Gender; Men; Masculinity; Evaluation; Randomised controlled trial; Qualitative
7.  Reducing the time before consulting with symptoms of lung cancer: a randomised controlled trial in primary care 
Background
Most individuals with lung cancer have symptoms for several months before presenting to their GP. Earlier consulting may improve survival.
Aim
To evaluate whether a theory-based primary care intervention increased timely consulting of individuals with symptoms of lung cancer.
Design and setting
Open randomised controlled trial comparing intervention with usual care in two general practices in north-east Scotland.
Method
Smokers and ex-smokers aged ≥55 years were randomised to receive a behavioural intervention or usual care. The intervention comprised a single nurse consultation at participants’ general practice and a self-help manual. The main outcomes were consultations within target times for individuals with new chest symptoms (≤3 days haemoptysis, ≤3 weeks other symptoms) in the year after the intervention commenced, and intentions about consulting with chest symptoms at 1 and 6 months.
Results
Two hundred and twelve participants were randomised and 206 completed the trial. The consultation rate for new chest symptoms in the intervention group was 1.19 (95% confidence interval [CI] = 0.92 to 1.53; P = 0.18) times higher than in the usual-care group and the proportion of consultations within the target time was 1.11 (95% CI = 0.41 to 3.03; P = 0.83) times higher. One month after the intervention commenced, the intervention group reported intending to consult with chest symptoms 31 days (95% CI = 7 to 54; P = 0.012) earlier than the usual care group, and at 6 months this was 25 days (95% CI = 1.5 to 48; P = 0.037) earlier.
Conclusion
Behavioural intervention in primary care shortened the time individuals at high risk of lung disease intended to take before consulting with new chest symptoms (the secondary outcome of the study), but increases in consultation rates and the proportions of consultations within target times were not statistically significant.
doi:10.3399/bjgp13X660779
PMCID: PMC3529292  PMID: 23336469
early detection of cancer; general practice; illness behaviour; lung neoplasms; randomised controlled trial
8.  Weight management for overweight and obese men delivered through professional football clubs: a pilot randomized trial 
Background
The prevalence of male obesity is increasing, but men are less likely than women to attend existing weight management programmes. We have taken a novel approach to reducing perceived barriers to weight loss for men by using professional football (soccer) clubs to encourage participation in a weight management group programme, gender-sensitised in content and style of delivery. Football Fans in Training (FFIT) provides 12 weeks of weight loss, physical activity and healthy eating advice at top professional football clubs in Scotland. This pilot randomized trial explored the feasibility of using these clubs as a setting for a randomized controlled trial of 12 month weight loss following men’s participation in FFIT.
Methods
A two-arm pilot trial at two Scottish Premier League football clubs (one large, one smaller), with 103 men (aged 35–65, body mass index (BMI) ≥27 kg/m2) individually randomized to the intervention (n=51, received the pilot programme (p-FFIT) immediately) and waitlist comparison (n=52, received p-FFIT after four months) groups. Feasibility of recruitment, randomization, data collection and retention were assessed. Objective physical measurements (weight, waist circumference, blood pressure, body composition) and questionnaires (self-reported physical activity, diet, alcohol consumption, psychological outcomes) were obtained from both groups by fieldworkers trained to standard protocols at baseline and 12 weeks, and from the intervention group at 6 and 12 months. Qualitative methods elicited men’s experiences of participation in the pilot trial.
Results
Following a short recruitment period, the recruitment target was achieved at the large, but not smaller, club. Participants’ mean age was 47.1±8.4 years; mean BMI 34.5±5.0 kg/m2. Retention through the trial was good (>80% at 12 weeks and 6 months; >75% at 12 months), and 76% attended at least 80% of available programme delivery sessions. At 12 weeks, the intervention group lost significantly more weight than the comparison group (4.6% c.f. -0.6%, p<.001) and many maintained this to 12 months (intervention group baseline-12 month weight loss: 3.5%, p<.001). There were also improvements in self-reported physical activity and diet, many sustained long term.
Conclusions
The results demonstrated the feasibility of trial procedures and the potential of FFIT to engage men in sustained weight loss and positive lifestyle change. They supported the conduct of a fully-powered randomized controlled trial.
doi:10.1186/1479-5868-10-121
PMCID: PMC3945776  PMID: 24171842
Overweight; Obesity; Physical activity; Diet; Behaviour change; Men; Gender; Masculinities; Intervention; Sports club
9.  Developing a complex intervention to reduce time to presentation with symptoms of lung cancer 
The British Journal of General Practice  2012;62(602):e605-e615.
Background
Lung cancer is the commonest cause of cancer in Scotland and is usually advanced at diagnosis. Median time between symptom onset and consultation is 14 weeks, so an intervention to prompt earlier presentation could support earlier diagnosis and enable curative treatment in more cases.
Aim
To develop and optimise an intervention to reduce the time between onset and first consultation with symptoms that might indicate lung cancer.
Design and setting
Iterative development of complex healthcare intervention according to the MRC Framework conducted in Northeast Scotland.
Method
The study produced a complex intervention to promote early presentation of lung cancer symptoms. An expert multidisciplinary group developed the first draft of the intervention based on theory and existing evidence. This was refined following focus groups with health professionals and high-risk patients.
Results
First draft intervention components included: information communicated persuasively, demonstrations of early consultation and its benefits, behaviour change techniques, and involvement of spouses/partners. Focus groups identified patient engagement, achieving behavioural change, and conflict at the patient–general practice interface as challenges and measures were incorporated to tackle these. Final intervention delivery included a detailed self-help manual and extended consultation with a trained research nurse at which specific action plans were devised.
Conclusion
The study has developed an intervention that appeals to patients and health professionals and has theoretical potential for benefit. Now it requires evaluation.
doi:10.3399/bjgp12X654579
PMCID: PMC3426599  PMID: 22947581
early diagnosis; health services research; lung cancer; primary health care
10.  Double trouble: the impact of multimorbidity and deprivation on preference-weighted health related quality of life a cross sectional analysis of the Scottish Health Survey 
Objective
To investigate the association between multimorbidity and Preference_Weighted Health Related Quality of Life (PW_HRQoL), a score that combines physical and mental functioning, and how this varies by socioeconomic deprivation and age.
Design
The Scottish Health Survey (SHeS) is a cross-sectional representative survey of the general population which included the SF-12, a survey of HRQoL, for individuals 20 years and over.
Methods
For 7,054 participants we generated PW_HRQoL scores by running SF-12 responses through the SF-6D algorithm. The resulting scores ranged from 0.29 (worst health) to 1 (perfect health). Using ordinary least squares, we first investigated associations between scores and increasing counts of longstanding conditions, and then repeated for multimorbidity (2+ conditions). Estimates were made for the general population and quintiles of socioeconomic deprivation. For multimorbidity, the analyses were repeated stratifying the population by age group (20–44, 45–64, 65+).
Results
45% of participants reported a longstanding condition and 18% reported multimorbidity. The presence of 1, 2, or 3+ longstanding conditions were associated with average reductions in PW_HRQoL scores of 0.081, 0.151 and 0.212 respectively. Reduction in scores associated with multimorbidity was 33% greater in the most deprived quintile compared to the least deprived quintile, with the biggest difference (80%) in the 20–44 age groups. There were no significant gender differences.
Conclusions
PW_HRQoL decreases markedly with multimorbidity, and is exacerbated by higher deprivation and younger age. There is a need to prioritise interventions to improve the HRQoL for (especially younger) adults with multimorbidity in deprived areas.
Box 1
What Is Known?
Prevalence and premature onset of multimorbidity increases as socioeconomic position worsens. Previous studies have investigated the effect of multimorbidity on Health Related Quality of Life (HRQoL) on separate physical and mental health states. There is limited data on how HRQoL falls as the number of conditions increase, and how estimates vary across the general population.
Leaving physical and mental health as separate categories can inhibit assessment of overall HRQoL. The use of a Preference_Weighted Health Related Quality of Life (PW_HRQoL) score provides a single summary measure of overall health, by weighting mental and physical states by their perceived importance as part of overall HRQoL. The use of a single score enables a simple and consistent assessment of the impact of conditions and how this varies across the population. Economists term PW_HRQoL scores health utilities.
What this study adds?
This is the first study to estimate how the impact of multimorbidity on PW_HRQoL scores varies by age group and socioeconomic deprivation. Multimorbidity has a substantial negative impact on HRQoL which is most severe in areas of deprivation, especially in younger adults.
Measuring the burden of multimorbidity using PW_HRQoL provides consistency with how economists measure HRQoL; changes in which can be used in economic evaluation to assess the cost effectiveness of interventions.
doi:10.1186/1475-9276-12-67
PMCID: PMC3765174  PMID: 23962150
Multimorbidity; Preference_Weighted Health Related Quality of Life (PW_HRQoL); Deprivation; Inequality
11.  ‘Help for Hay Fever’, a goal-focused intervention for people with intermittent allergic rhinitis, delivered in Scottish community pharmacies: study protocol for a pilot cluster randomized controlled trial 
Trials  2013;14:217.
Background
Despite the availability of evidence-based guidelines for managing allergic rhinitis in primary care, management of the condition in the United Kingdom (UK) remains sub-optimal. Its high prevalence and negative effects on quality of life, school performance, productivity and co-morbid respiratory conditions (in particular, asthma), and high health and societal costs, make this a priority for developing novel models of care. Recent Australian research demonstrated the potential of a community pharmacy-based ‘goal-focused’ intervention to help people with intermittent allergic rhinitis to self-manage their condition better, reduce symptom severity and improve quality of life. In this pilot study we will assess the transferability of the goal-focused intervention to a UK context, the suitability of the intervention materials, procedures and outcome measures and collect data to inform a future definitive UK randomized controlled trial (RCT).
Methods/Design
A pilot cluster RCT with associated preliminary economic analysis and embedded qualitative evaluation. The pilot trial will take place in two Scottish Health Board areas: Grampian and Greater Glasgow & Clyde. Twelve community pharmacies will be randomly assigned to intervention or usual care group. Each will recruit 12 customers seeking advice or treatment for intermittent allergic rhinitis. Pharmacy staff in intervention pharmacies will support recruited customers in developing strategies for setting and achieving goals that aim to avoid/minimize triggers for, and eliminate/minimize symptoms of allergic rhinitis. Customers recruited in non-intervention pharmacies will receive usual care. The co-primary outcome measures, selected to inform a sample size calculation for a future RCT, are: community pharmacy and customer recruitment and completion rates; and effect size of change in the validated mini-Rhinoconjunctivitis Quality of Life Questionnaire between baseline, one-week and six-weeks post-intervention. Secondary outcome measures relate to changes in symptom severity, productivity, medication adherence and self-efficacy. Quantitative data about accrual, retention and economic measures, and qualitative data about participants’ experiences during the trial will be collected to inform the future RCT.
Discussion
This work will lay the foundations for a definitive RCT of a community pharmacy-based ‘goal-focused’ self-management intervention for people with intermittent allergic rhinitis. Results of the pilot trial are expected to be available in April 2013.
Trial registration
Current Controlled Trials ISRCTN43606442
doi:10.1186/1745-6215-14-217
PMCID: PMC3721993  PMID: 23856015
Respiratory; Allergy; Community pharmacy; Self-care
12.  Health and Illness in a Connected World: How Might Sharing Experiences on the Internet Affect People's Health? 
The Milbank Quarterly  2012;90(2):219-249.
Context
The use of the Internet for peer-to-peer connection has been one of its most dramatic and transformational features. Yet this is a new field with no agreement on a theoretical and methodological basis. The scientific base underpinning this activity needs strengthening, especially given the explosion of web resources that feature experiences posted by patients themselves. This review informs a National Institute for Health Research (NIHR) (UK) research program on the impact of online patients’ accounts of their experiences with health and health care, which includes the development and validation of a new e-health impact questionnaire.
Methods
We drew on realist review methods to conduct a conceptual review of literature in the social and health sciences. We developed a matrix to summarize the results, which we then distilled from a wide and diverse reading of the literature. We continued reading until we reached data saturation and then further refined the results after testing them with expert colleagues and a public user panel.
Findings
We identified seven domains through which online patients’ experiences could affect health. Each has the potential for positive and negative impacts. Five of the identified domains (finding information, feeling supported, maintaining relationships with others, affecting behavior, and experiencing health services) are relatively well rehearsed, while two (learning to tell the story and visualizing disease) are less acknowledged but important features of online resources.
Conclusions
The value of first-person accounts, the appeal and memorability of stories, and the need to make contact with peers all strongly suggest that reading and hearing others’ accounts of their own experiences of health and illnesss will remain a key feature of e-health. The act of participating in the creation of health information (e.g., through blogging and contributing to social networking on health topics) also influences patients’ experiences and has implications for our understanding of their role in their own health care management and information.
doi:10.1111/j.1468-0009.2012.00662.x
PMCID: PMC3460203  PMID: 22709387
e-health; review; theory; patients' experiences
13.  Implementing a framework for goal setting in community based stroke rehabilitation: a process evaluation 
Background
Goal setting is considered ‘best practice’ in stroke rehabilitation; however, there is no consensus regarding the key components of goal setting interventions or how they should be optimally delivered in practice. We developed a theory-based goal setting and action planning framework (G-AP) to guide goal setting practice. G-AP has 4 stages: goal negotiation, goal setting, action planning & coping planning and appraisal & feedback. All stages are recorded in a patient-held record. In this study we examined the implementation, acceptability and perceived benefits of G-AP in one community rehabilitation team with people recovering from stroke.
Methods
G-AP was implemented for 6 months with 23 stroke patients. In-depth interviews with 8 patients and 8 health professionals were analysed thematically to investigate views of its implementation, acceptability and perceived benefits. Case notes of interviewed patients were analysed descriptively to assess the fidelity of G-AP implementation.
Results
G-AP was mostly implemented according to protocol with deviations noted at the planning and appraisal and feedback stages. Each stage was felt to make a useful contribution to the overall process; however, in practice, goal negotiation and goal setting merged into one stage and the appraisal and feedback stage included an explicit decision making component. Only two issues were raised regarding G-APs acceptability: (i) health professionals were concerned about the impact of goal non-attainment on patient’s well-being (patients did not share their concerns), and (ii) some patients and health professionals found the patient-held record unhelpful. G-AP was felt to have a positive impact on patient goal attainment and professional goal setting practice. Collaborative partnerships between health professionals and patients were apparent throughout the process.
Conclusions
G-AP has been perceived as both beneficial and broadly acceptable in one community rehabilitation team; however, implementation of novel aspects of the framework was inconsistent. The regulatory function of goal non-attainment and the importance of creating flexible partnerships with patients have been highlighted. Further development of the G-AP framework, training package and patient held record is required to address the specific issues highlighted by this process evaluation. Further evaluation of G-AP is required across diverse community rehabilitation settings.
doi:10.1186/1472-6963-13-190
PMCID: PMC3671148  PMID: 23705824
Stroke rehabilitation; Goal setting; Process evaluation; Multi-disciplinary team
14.  Multimorbidity in primary care: a systematic review of prospective cohort studies 
The British Journal of General Practice  2012;62(597):e297-e307.
Background
Primary care increasingly deals with patients with multimorbidity, but relevant evidence-based interventions are scarce. Knowledge about multimorbidity over time is required to inform the development of effective interventions.
Aim
This review identifies prospective cohort studies of multimorbidity in primary care to determine: their nature, scope and key findings; the methodologies used; and gaps in knowledge.
Design
Systematic review.
Method
Studies were identified by searching electronic databases, reviewing citations, and writing to authors. Searches were limited to adult populations with no restrictions on publication date or language. In total, 996 articles were identified and screened.
Results
Of the 996 articles, six detailing five completed prospective cohort studies were selected as appropriate. Three of the studies were undertaken in the US and two in The Netherlands; none was nationally representative. The main focus of the studies was: healthcare utilisation and/or costs (n = 3); patients' physical functioning (n = 1); and risk factors for developing multimorbidity (n = 1). The conditions that were included varied widely. The findings of these studies showed that multimorbidity increased healthcare costs (n = 2), inpatient admission (n = 1), death rates (n = 1), and service use (n = 3), and reduced physical functioning (n = 1). One study identified psychosocial risk factors for multimorbidity. No study used random sampling, sample sizes were relatively small (414–3745 patients at baseline), and study duration was relatively short (1–4 years). No study focused on prevalence, treatment use, patient safety, service models, cultural or socioeconomic factors, and patient experience, and no study collected qualitative data.
Conclusion
Few longitudinal studies based in primary care have investigated multimorbidity. Further large, long-term prospective studies are required to inform healthcare commissioning, planning, and delivery.
doi:10.3399/bjgp12X636146
PMCID: PMC3310037  PMID: 22520918
chronic disease; multimorbidity; primary care; review
15.  Football Fans in Training: the development and optimization of an intervention delivered through professional sports clubs to help men lose weight, become more active and adopt healthier eating habits 
BMC Public Health  2013;13:232.
Background
The prevalence of obesity in men is rising, but they are less likely than women to engage in existing weight management programmes. The potential of professional sports club settings to engage men in health promotion activities is being increasingly recognised. This paper describes the development and optimization of the Football Fans in Training (FFIT) programme, which aims to help overweight men (many of them football supporters) lose weight through becoming more active and adopting healthier eating habits.
Methods
The MRC Framework for the design and evaluation of complex interventions was used to guide programme development in two phases. In Phase 1, a multidisciplinary working group developed the pilot programme (p-FFIT) and used a scoping review to summarize previous research and identify the target population. Phase 2 involved a process evaluation of p-FFIT in 11 Scottish Premier League (SPL) clubs. Participant and coach feedback, focus group discussions and interviews explored the utility/acceptability of programme components and suggestions for changes. Programme session observations identified examples of good practice and problems/issues with delivery. Together, these findings informed redevelopment of the optimized programme (FFIT), whose components were mapped onto specific behaviour change techniques using an evidence-based taxonomy.
Results
p-FFIT comprised 12, weekly, gender-sensitised, group-based weight management classroom and ‘pitch-side’ physical activity sessions. These in-stadia sessions were complemented by an incremental, pedometer-based walking programme. p-FFIT was targeted at men aged 35-65 years with body mass index ≥ 27 kg/m2. Phase 2 demonstrated that participants in p-FFIT were enthusiastic about both the classroom and physical activity components, and valued the camaraderie and peer-support offered by the programme. Coaches appreciated the simplicity of the key healthy eating and physical activity messages. Suggestions for improvements that were incorporated into the optimized FFIT programme included: more varied in-stadia physical activity with football-related components; post-programme weight management support (emails and a reunion session); and additional training for coaches in SMART goal setting and the pedometer-based walking programme.
Conclusions
The Football Fans in Training programme is highly acceptable to participants and SPL coaches, and is appropriate for evaluation in a randomised controlled trial.
doi:10.1186/1471-2458-13-232
PMCID: PMC3621078  PMID: 23496915
16.  Patient-Reported Outcome Measures for Chronic Obstructive Pulmonary Disease 
The Patient  2013;6(1):11-21.
Background
Patient-reported outcome measures (PROMs) are intended to reflect outcomes relevant to patients. They are increasingly used for healthcare quality improvement. To produce valid measures, patients should be involved in the development process but it is unclear whether this usually includes people with low literacy skills or learning disabilities. This potential exclusion raises concerns about whether these groups will be able to use these measures and participate in quality improvement practices.
Methods
Taking PROMs for chronic obstructive pulmonary disease (COPD) as an exemplar condition, our review determined the inclusion of people with low literacy skills and learning disabilities in research developing, validating, and using 12 PROMs for COPD patients. The studies included in our review were based on those identified in two existing systematic reviews and our update of this search.
Results
People with low literacy skills and/or learning disabilities were excluded from the development of PROMs in two ways: explicitly through the participant eligibility criteria and, more commonly, implicitly through recruitment or administration methods that would require high-level reading and cognitive abilities. None of the studies mentioned efforts to include people with low literacy skills or learning disabilities.
Conclusion
Our findings suggest that people with low literacy skills or learning disabilities are left out of the development of PROMs. Given that implicit exclusion was most common, researchers and those who administer PROMs may not even be aware of this problem. Without effort to improve inclusion, unequal quality improvement practices may become embedded in the health system.
doi:10.1007/s40271-013-0004-5
PMCID: PMC3585908  PMID: 23417577
17.  Using patient reported outcome measures in health services: A qualitative study on including people with low literacy skills and learning disabilities 
Background
Patient reported outcome measures (PROMs) are self-report measures of health status increasingly promoted for use in healthcare quality improvement. However people with low literacy skills or learning disabilities may find PROMs hard to complete. Our study investigated stakeholder views on the accessibility and use of PROMs to develop suggestions for more inclusive practice.
Methods
Taking PROMs recommended for chronic obstructive pulmonary disease (COPD) as an example, we conducted 8 interviews with people with low literacy skills and/or learning disabilities, and 4 focus groups with 20 health professionals and people with COPD. Discussions covered the format and delivery of PROMs using the EQ-5D and St George Respiratory Questionnaire as prompts. Thematic framework analysis focused on three main themes: Accessibility, Ease of Use, and Contextual factors.
Results
Accessibility included issues concerning the questionnaire format, and suggestions for improvement included larger font sizes and more white space. Ease of Use included discussion about PROMs’ administration. While health professionals suggested PROMs could be completed in waiting rooms, patients preferred settings with more privacy and where they could access help from people they know. Contextual Factors included other challenges and wider issues associated with completing PROMs. While health professionals highlighted difficulties created by the system in managing patients with low literacy/learning disabilities, patient participants stressed that understanding the purpose of PROMs was important to reduce intimidation.
Conclusions
Adjusting PROMs’ format, giving an explicit choice of where patients can complete them, and clearly conveying PROMs’ purpose and benefit to patients may help to prevent inequality when using PROMs in health services.
doi:10.1186/1472-6963-12-431
PMCID: PMC3520727  PMID: 23181735
Patient reported outcome measures; Quality improvement; Chronic obstructive pulmonary disease; Low literacy; Learning disabilities
18.  Developing novel evidence-based interventions to promote asthma action plan use: a cross-study synthesis of evidence from randomised controlled trials and qualitative studies 
Trials  2012;13:216.
Background
Long-standing randomised controlled trial (RCT) evidence indicates that asthma action plans can improve patient outcomes. Internationally, however, these plans are seldom issued by professionals or used by patients/carers. To understand how the benefits of such plans might be realised clinically, we previously investigated barriers and facilitators to their implementation in a systematic review of relevant RCTs and synthesised qualitative studies exploring professional and patient/carer views. Our final step was to integrate these two separate studies.
Methods
First, a theoretical model of action plan implementation was proposed, derived from our synthesis of 19 qualitative studies, identifying elements which, if incorporated into future interventions, could promote their use. Second, 14 RCTs included in the quantitative synthesis were re-analysed to assess the extent to which these elements were present within their interventions (that is, ‘strong’, ‘weak’ or ‘no’ presence) and with what effect. Matrices charted each element’s presence and strength, facilitating analysis of element presence and action plan implementation.
Results
Four elements (professional education, patient/carer education, (patient/carer and professional) partnership working and communication) were identified in our model as likely to promote asthma plan use. Thirteen interventions reporting increased action plan implementation contained all four elements, with two or more strongly present. One intervention reporting no effect on action plan implementation contained only weakly present elements. Intervention effectiveness was reported using a narrow range of criteria which did not fully reflect the four elements. For example, no study assessed whether jointly developed action plans increased use. Whilst important from the professional and patient/carer perspectives, the integral role of these elements in intervention delivery and their effect on study outcomes was under-acknowledged in these RCTs.
Conclusions
Our novel approach provides an evidence-base for future action plan interventions. Such interventions need to ensure all elements in our implementation model (patient/carer and professional education to support development of effective partnership working and communication) are strongly present within them and a wider range of criteria better reflecting the realities of clinical practice and living with asthma are used to measure their effectiveness. We now intend to test such a complex intervention using a cluster trial design.
doi:10.1186/1745-6215-13-216
PMCID: PMC3561124  PMID: 23164151
Asthma action plans; Cross-study synthesis; Intervention development; Intervention reporting; Qualitative synthesis; Integration
19.  Patients' needs following colorectal cancer diagnosis: where does primary care fit in? 
The British Journal of General Practice  2011;61(592):e692-e699.
Background
Colorectal cancer is the third most common cancer in the UK. Patients with colorectal cancer spend most of their time in the community, but the role of primary care in their management and follow-up is unclear.
Aim
To explore colorectal cancer patients' experiences of psychosocial problems and their management in primary and specialist care.
Design and setting
Longitudinal qualitative study of participants recruited from three hospitals in the west of Scotland and interviewed in their own homes.
Method
In-depth interviews with 24 participants with a new diagnosis of colorectal cancer, and then follow-up interviews 12 months later.
Results
Participants' needs following a diagnosis for colorectal cancer included physical, psychological, and social issues. GPs played a key role in diagnosis, after which they were less involved. Participants valued GPs making unsolicited contact and offering support. Participants described being well supported by clinical nurse specialists who are expert in the illness, and who provide continuity of care and psychological support. A year after diagnosis, when there was less contact with GPs and clinical nurse specialists, participants still faced challenges associated with the ongoing impact of colorectal cancer
Conclusion
While some patients enjoyed straightforward recoveries from surgery, others experienced longer-term implications from their disease and treatment, particularly bowel-function issues, fatigue, anxiety, and sexual problems. The potential for primary care to contribute more to the ongoing care of colorectal cancer patients was identified.
doi:10.3399/bjgp11X606582
PMCID: PMC3207086  PMID: 22054330
colorectal neoplasms; follow-up studies; primary health care; qualitative research
20.  Words matter: a qualitative investigation of which weight status terms are acceptable and motivate weight loss when used by health professionals 
BMC Public Health  2011;11:513.
Background
Health professionals have an important role to play in the management of obesity, but may be unsure how to raise weight issues with patients. The societal stigma associated with excess weight means that weight status terms may be misunderstood, cause offence and risk upsetting patient-professional relationships. This study investigated the views of people who were overweight or obese on the acceptability of weight status terms and their potential to motivate weight loss when used by health professionals.
Methods
A qualitative study comprising 34 semi-structured interviews with men and women in their mid-to-late 30s and 50s who were overweight or obese and had recently been informed of their weight status. Thematic framework analysis was conducted to allow the systematic comparison of views by age, gender and apparent motivation to lose weight.
Results
Although many people favoured 'Overweight' to describe their weight status, there were doubts about its effectiveness to motivate weight loss. Terms including 'BMI' ('Body Mass Index') or referring to the unhealthy nature of their weight were generally considered acceptable and motivational, although a number of men questioned the validity of BMI as an indicator of excess weight. Participants, particularly women, felt that health professionals should avoid using 'Fat'. Whilst response to 'Obese' was largely negative, people recognised that it could be appropriate in a health consultation. Some younger people, particularly those who appeared motivated to lose weight, felt 'Obese' could encourage weight loss, but it was also clear the term could provoke negative emotions if used insensitively.
Conclusions
Although most people who are overweight or obese accept that it is appropriate for health professionals to discuss weight issues with patients, there is great variation in response to the terms commonly used to describe excess weight. There is no one-size-fits-all approach to discussing weight status: some men and younger people may appreciate a direct approach, whilst others need to be treated more sensitively. It is therefore important that health professionals use their knowledge and understanding to select the terms that are most likely to be acceptable, but at the same time have most potential to motivate each individual patient.
doi:10.1186/1471-2458-11-513
PMCID: PMC3142235  PMID: 21714892
21.  Response to written feedback of clinical data within a longitudinal study: a qualitative study exploring the ethical implications 
Background
There is a growing ethical imperative to feedback research results to participants but there remains a striking lack of empirical research on how people respond to individualised feedback. We sought to explore longitudinal study participants' response to receiving individual written feedback of weight-related and blood results, and to consider the balance of harms against benefits.
Methods
A qualitative study with face-to-face and telephone interviews conducted with 50 men and women who had participated in the fifth and most recent wave of the cohort study 'West of Scotland Twenty-07' and received a feedback letter containing body mass index (BMI), body fat percentage, cholesterol and glycated haemoglobin A1c (HbA1c) results.
Results
Expectations of, and response to, the feedback of their individual results varied. Whilst half of the participants were on the whole 'pleased' with their results or held neutral views, half reported negative responses such as 'shock' or 'concern', particularly in relation to the weight-related results. Participants who were overweight and obese used the most negative language about their results, with some being quite distressed and reporting feelings of powerlessness, low self-image and anxiety over future health. Nevertheless, some people reported having implemented lifestyle changes in direct response to the feedback, resulting in significant weight-loss and/or dietary improvements. Others reported being motivated to change their behaviour. Age and gender differences were apparent in these narratives of behaviour change.
Conclusions
The potential harm caused to some participants may be balanced against the benefit to others. More evaluation of the impact of the format, content and means of individualised feedback of research findings in non-trial studies is required given the growing ethical imperative to offer participants a choice of receiving their results, and the likelihood that a high percentage will choose to receive them.
doi:10.1186/1471-2288-11-10
PMCID: PMC3041784  PMID: 21272336
22.  Frequent consulting and multiple morbidity: a qualitative comparison of ‘high’ and ‘low’ consulters of GPs 
Family Practice  2008;25(3):168-175.
Background. Frequent consulting is associated with multiple and complex social and health conditions. It is not known how the impact of multiple conditions, the ability to self-manage and patient perception of the GP consultation combines to influence consulting frequency.
Objective. To investigate reasons for frequent consultation among people with multiple morbidity but contrasting consulting rates.
Methods. Qualitative study with in-depth interviews in the west of Scotland. Participants were 23 men and women aged about 50 years with four or more chronic illnesses; 11 reported consulting seven or more times in the last year [the frequent consulters (FCs)] and 12, three or fewer times [the less frequent consulters (LFCs)]. The main outcome measures were the participants’ accounts of their symptoms, self-management strategies and reasons for consulting a GP.
Results. All participants used multiple self-management strategies. FCs described: more disruptive symptoms, which were resistant to self-management strategies; less access to fewer treatments and resources and more medical monitoring, for unstable conditions and drug regimens. The LFCs reported: less severe and more containable symptoms; accessing more efficacious self-management strategies and infrequent GP monitoring for stable conditions and routine drug regimens. All participants conveyed consulting as a ‘last resort’. However, the GP was seen as ‘ally’, for the FCs, and as ‘innocent bystander’, for the LFCs.
Conclusions. This qualitative investigation into the combined significance of multiple morbidities and self-management on the GP consultation suggests that current models of self-management might have limited potential to reduce utilization rates among this vulnerable group. Severity of symptoms, stability of condition and complexity of drug regimens combine to influence the availability of effective resources and influence frequency of GP consultations.
doi:10.1093/fampra/cmn017
PMCID: PMC2440493  PMID: 18448858
Frequent consulting; self-management; multiple chronic illness; qualitative
23.  What aspects of periods are most bothersome for women reporting heavy menstrual bleeding? Community survey and qualitative study 
BMC Women's Health  2007;7:8.
Background
Heavy menstrual bleeding is a common symptom amongst women of reproductive age, yet questions remain about why some women experience this as a problem while others do not. We investigated the concerns of women who reported heavy menstrual bleeding on questionnaire.
Methods
A cross-sectional postal survey and qualitative interviews were carried out amongst a community-based sample of women in Lothian, Scotland. 906 women aged 25 to 44 reported heavy or very heavy periods in response to a postal survey of 2833 women registered with 19 general practices. Amongst those who had reported heavy menstrual bleeding, analysis was carried out of responses to the free text questionnaire item, "What bothers you most about your periods?" In addition, 32 of these women participated in qualitative interviews and their accounts were analysed to explore how menstrual symptoms and 'problems' with periods were experienced.
Results
Even amongst this subgroup of women, selected on the basis of having reported their periods as heavy in the survey, pain was the aspect of their periods that 'most bothered' them, followed by heaviness, mood changes or tiredness, and irregularity or other issues of timing. Interviewees' accounts similarly suggested that a range of menstrual symptoms were problematic and some women did not disentangle which was worst. Judgements of periods as a problem were based on the impact of menstrual symptoms on daily life and this was contingent on social circumstances such as type of paid work and other responsibilities. Although women spoke readily of whether their periods were a problem, there was less clarity in accounts of whether or not menstrual loss was 'heavy'; women said they made judgements based on what was normal for them, degree of difficulty in containing blood loss and pattern of loss.
Conclusion
Women with heavy periods are bothered by a range of menstrual symptoms and their impact on everyday life. Clinical emphasis should be on clarifying the presenting problem and providing help and advice for this, as well as on excluding serious disease. Sometimes simple approaches, such as help with analgesia, may be all that is required.
doi:10.1186/1472-6874-7-8
PMCID: PMC1904195  PMID: 17543131
24.  Symptom experience and subsequent mortality: results from the West of Scotland Twenty-07 study 
Background
Associations between symptom experience and mortality have rarely been investigated. One study has suggested that the number of symptoms people experience may be an important predictor of mortality. This novel and potentially important finding may have important implications but needs to be tested in other cohorts.
Methods
858 people aged around 58 years were interviewed by nurses in 1990/1 as part of the West of Scotland Twenty-07 Study. They were asked about the presence of symptoms in the last month from a checklist of 33 symptoms. Measures of morbidity included symptom type (respiratory, musculoskeletal, gastrointestinal, mental health, neurological, systemic) and symptom summary measures looking at the number and impact of symptoms (total number; number participants tended to have; number participants did not tend to have; number which restricted usual activities; number which led to GP consultation). Hazard ratios for thirteen-year all-cause mortality were calculated for symptom types, symptom summary measures, and self-assessed health with and without adjustment.
Results
On unadjusted analysis, and after adjusting for gender, socio-economic status and smoking, mortality was elevated in individuals reporting respiratory, systemic and mental health symptoms. After additional adjustment for chronic conditions and self-assessed health, only the association between mental health symptoms and mortality remained significant. On unadjusted analysis, and after adjusting for gender, socio-economic status and smoking, mortality was elevated in individuals with many (≥ 6) symptoms in four of the symptom summary measures examined. These relationships were no longer significant after additional adjustment for chronic conditions and self-assessed health. A clear trend of increasing mortality as self-assessed health became poorer was observed. This pattern remained statistically significant after adjustment for gender, socio-economic status, smoking, chronic conditions and the total number of symptoms experienced.
Conclusion
Symptoms often thought of as minor may have important consequences later in life especially for those reporting mental health-related symptoms or those experiencing many symptoms. In this study however, self-assessed health appeared to be a better predictor of mortality than the type or number of symptoms experienced, even when the tendency to have and impact of the symptoms were taken into account.
doi:10.1186/1472-6963-6-158
PMCID: PMC1702541  PMID: 17156478
25.  Personal continuity and access in UK general practice: a qualitative study of general practitioners' and patients' perceptions of when and how they matter 
BMC Family Practice  2006;7:11.
Background
Personal continuity is a core value for family practice, but policy and performance targets emphasise other aspects of care, particularly waiting times for consultation. This study examined patient and general practitioner (GP) perceptions of the value of personal continuity and rapid access, and the relationship between them.
Methods
Qualitative analysis of semi-structured interviews with a purposive sample of 16 GPs and 32 patients in the Lothian region of Scotland, to identify whether, how, why and in which circumstances personal continuity and rapid access were valued.
Results
From the patients' perspective, what mattered was 'access to appropriate care' depending on the problem to be dealt with. For a few patients, rapid access was the only priority. For most, rapid access was balanced against greater involvement in the consultation when seeing 'their' trusted doctor, which was particularly valued for chronic, complex and emotional problems. GPs focused on the value of personal continuity in the consultation for improving the diagnosis and management of the same kinds of problem. GPs did not perceive enabling access to be a core part of their work. There was little evidence that GPs routinely discussed with patients when or how personal continuity and access should be balanced.
Conclusion
'Access to appropriate care' from the patients' perspective is not fully addressed by GPs' focus on personal continuity, nor by performance targets focused only on speed of access. GPs need to make enabling access as much a part of their core values as personal continuity, and access targets need to be based on less simplistic measures that account for the appropriateness of care as well as speed of access.
doi:10.1186/1471-2296-7-11
PMCID: PMC1413534  PMID: 16504130

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