Nicola Hall

Systematic review: adherence to a gluten―free diet in adult patients with coeliac disease

Background  Coeliac disease is increasingly diagnosed in adult patients who present with atypical symptoms or who are asymptomatic and detected by case screening. Its treatment, a gluten‐free diet, can have a considerable impact on daily living. Understanding the factors associated with non‐adherence is important in terms of supporting patients with their condition.

The Fight for ‘Health-related Normality’: A Qualitative Study of the Experiences of Individuals Living with Established Inflammatory Bowel Disease (IBD)

This article reports on the experiences of individuals living with IBD and identifies a range of coping strategies used by them. Qualitative data from 15 individual interviews and three focus groups were analysed using a grounded theory approach. The main focus is on the emergent core concept of ‘health-related normality’. A theoretical framework is proposed to explain how individuals with IBD assess their health-related normality, their fight to maintain it and their need to retain the appearance of normality to others. It is concluded that individuals maintain their health-related normality along certain time and context sensitive continuums rather than fitting into a distinct typology.

Intentional and inadvertent non-adherence in adult coeliac disease. A cross-sectional survey ☆

Adherence to a gluten-free diet is the mainstay of treatment for coeliac disease. Non-adherence is common as the diet is restrictive and can be difficult to follow. This study aimed to determine the rates of intentional and inadvertent non-adherence in adult coeliac disease and to examine the factors associated with both. A self-completion questionnaire was mailed to adult coeliac patients identified from the computer records of 31 family practices within the North East of England. We received 287 responses after one reminder. Intentional gluten consumption was reported by 115 (40%) of respondents. 155 (54%) had made at least one known mistaken lapse over the same period and 82 (29%) reported neither intentional nor mistaken gluten consumption. Using logistic regression analysis, low self-efficacy, perceptions of tolerance to gluten and intention were found to be independently predictive of intentional gluten consumption. A statistical model predicted 71.8% of cases reporting intentional lapses. Intentional non-adherence to the GFD was found to be common but not as frequent as inadvertent lapses. Distinguishing the factors influencing both intentional and inadvertent non-adherence is useful in understanding dietary self-management in coeliac disease.

Symptoms and other factors associated with time to diagnosis and stage of lung cancer: a prospective cohort study

Background:This prospective cohort study aimed to identify symptom and patient factors that influence time to lung cancer diagnosis and stage at diagnosis.Methods:Data relating to symptoms were collected from patients upon referral with symptoms suspicious of lung cancer in two English regions; we also examined primary care and hospital records for diagnostic routes and diagnoses. Descriptive and regression analyses were used to investigate associations between symptoms and patient factors with diagnostic intervals and stage.Results:Among 963 participants, 15.9% were diagnosed with primary lung cancer, 5.9% with other thoracic malignancies and 78.2% with non-malignant conditions. Only half the cohort had an isolated first symptom (475, 49.3%); synchronous first symptoms were common. Haemoptysis, reported by 21.6% of cases, was the only initial symptom associated with cancer. Diagnostic intervals were shorter for cancer than non-cancer diagnoses (91 vs 124 days, P=0.037) and for late-stage than early-stage cancer (106 vs 168 days, P=0.02). Chest/shoulder pain was the only first symptom with a shorter diagnostic interval for cancer compared with non-cancer diagnoses (P=0.003).Conclusions:Haemoptysis is the strongest symptom predictor of lung cancer but occurs in only a fifth of patients. Programmes for expediting earlier diagnosis need to focus on multiple symptoms and their evolution.

The management of common gastrointestinal disorders in general practice A survey by the European Society for Primary Care Gastroenterology (ESPCG) in six European countries.

BACKGROUND Gastrointestinal (GI) disorders account for 10% of all consultations in primary care. Little is known about the management of GI disorders by general practitioners (GP) across different European countries. AIM AND METHODS We undertook a postal survey of randomly selected samples of GPs in six European countries (UK, Holland, Spain, Greece, Poland, Czech Republic) to determine patterns of diagnosis, management and service use in GI disorders. RESULTS We received 939 responses, response rate 32%. Over 80% of GPs were aware of at least three national guidelines for gastrointestinal disease. The availability of open access endoscopy ranged from 28% (Poland) to over 80% (Holland, Czech and UK). For uninvestigated dyspepsia the preferred first line management was proton pump inhibitor therapy (33-82%), Helicobacter pylori test and treat (19-47%), early endoscopy (5-32%), specialist referral (2-21%). Regarding irritable bowel syndrome, 23% of respondents were familiar with one or more diagnostic criteria, but between 7% (Netherlands) and 32% (Poland) would ask for a specialist opinion before making the diagnosis. CONCLUSION The wide variation between GPs both between and within countries partly reflects variations in health care systems but also differing levels of knowledge and awareness, factors which are relevant to educational and research policy.

Patient experience of infertility management in primary care: an in-depth interview study

BACKGROUND GPs do not have a full range of diagnostic resources to help manage infertile couples. Little is known about the patient experience of infertility management in primary care. OBJECTIVE To explore the patient experience of infertility management from a primary care perspective. METHODS This was a nested qualitative study with infertile couples in North-East England. In-depth interviews of infertile couples identified in the course of an observational study describing the incidence, prevalence, referral patterns and pregnancy outcomes for infertile couples. A grounded approach was used, with the interviews and analysis proceeding together using the method of constant comparison. Emergent themes and their links gave an overall explanation to the interview data. RESULTS We interviewed 22 patients in 13 interviews. Factors that influenced a couples experience of infertility management were personal and professional relationships, patient autonomy in decision making and access to services. CONCLUSIONS This study provides insights into the experiences of infertile couples seeking assisted reproduction from their GP. A good experience was linked to a strong personal relationship, a patient-centred professional relationship fostering informed decision making by the couple, GPs using diagnostic resources, interpreting restrictive clinical and social criteria and referring appropriately.

Attitudes and beliefs of non-participants in a population-based screening programme for colorectal cancer

Uptake of colorectal cancer screening programmes needs to be improved or at least maintained in order to achieve projected reductions in mortality and morbidity. Understanding the origins of non‐participation in screening is therefore important.

Symptoms and patient factors associated with longer time to diagnosis for colorectal cancer: results from a prospective cohort study

Background:The objective of this study is to investigate symptoms, clinical factors and socio-demographic factors associated with colorectal cancer (CRC) diagnosis and time to diagnosis.Methods:Prospective cohort study of participants referred for suspicion of CRC in two English regions. Data were collected using a patient questionnaire, primary care and hospital records. Descriptive and regression analyses examined associations between symptoms and patient factors with total diagnostic interval (TDI), patient interval (PI), health system interval (HSI) and stage.Results:A total of 2677 (22%) participants responded; after exclusions, 2507 remained. Participants were diagnosed with CRC (6.1%, 56% late stage), other cancers (2.0%) or no cancer (91.9%). Half the cohort had a solitary first symptom (1332, 53.1%); multiple first symptoms were common. In this referred population, rectal bleeding was the only initial symptom more frequent among cancer than non-cancer cases (34.2% vs 23.9%, P=0.004). There was no evidence of differences in TDI, PI or HSI for those with cancer vs non-cancer diagnoses (median TDI CRC 124 vs non-cancer 138 days, P=0.142). First symptoms associated with shorter TDIs were rectal bleeding, change in bowel habit, ‘feeling different’ and fatigue/tiredness. Anxiety, depression and gastro-intestinal co-morbidities were associated with longer HSIs and TDIs. Symptom duration-dependent effects were found for rectal bleeding and change in bowel habit.Conclusions:Doctors and patients respond less promptly to some symptoms of CRC than others. Healthcare professionals should be vigilant to the possibility of CRC in patients with relevant symptoms and mental health or gastro-intestinal comorbidities.

Symptom appraisal and healthcare-seeking for symptoms suggestive of colorectal cancer: a qualitative study

Objectives Timely diagnosis of colorectal cancer is important to improve survival. This study explored symptom appraisal and help-seeking among patients referred to specialist services with symptoms of colorectal cancer. Design Qualitative in-depth interview study. Setting and participants Participants were recruited on referral to gastroenterology clinics (North East and East of England); interviews were conducted soon after referral. We purposively sampled participants to ensure a range of accounts in terms of age, sex, diagnosis and geographical location. Methods Data collection and analysis were underpinned by the Model of Pathways to Treatment. Framework analysis was used to explore the data within and across cases, focusing on patient beliefs and experiences, disease factors and healthcare influences. Results 40 participants were interviewed (aged 43–87 years, 17 women, 18 diagnosed with colorectal cancer). Patients diagnosed with and without colorectal cancer had similar symptom pathways. We found a range of interacting and often competing biopsychosocial, contextual and cultural influences on the way in which people recognised, interpreted and acted on their symptoms. People attempted to ‘maintain normality’ through finding benign explanations for their symptoms. Bodily changes were appraised within the context of usual bowel patterns, comorbidities and life events, and decisions to seek help were made in relation to expectations about the course of symptoms. The ‘private nature’ of colorectal cancer symptoms could affect both their identification and discussions with others including healthcare professionals. Within the context of the National Health Service, people needed to legitimise appropriate use of healthcare services and avoid being thought of as wasting doctors’ time. Conclusions Findings provide guidance for awareness campaigns on reducing stigma around appraising and discussing bowel movements, and the importance of intermittent and non-specific symptoms. Altering perceptions about the appropriate use of health services could have a beneficial effect on time to presentation.

Decision making and referral from primary care for possible lung and colorectal cancer: a qualitative study of patients' experiences

BACKGROUND The challenge for GPs when assessing whether to refer a patient for cancer investigation is that many cancer symptoms are also caused by benign self-limiting illness. UK National Institute for Health and Care Excellence (NICE) referral guidelines emphasise that the patient should be involved in the decision-making process and be informed of the reasons for referral. Research to date, however, has not examined the extent to which these guidelines are borne out in practice. AIM To assess the degree to which patients are involved in the decision to be referred for investigation for symptoms associated with cancer and their understanding of the referral. DESIGN AND SETTING Qualitative interview study of patients referred to secondary care for symptoms suspicious of lung and colorectal cancer. Patients were recruited from two regions of England using maximum variation sampling. METHOD Transcribed interviews were analysed thematically. RESULTS The analysis was based on 34 patient interviews. Patients in both symptom pathways reported little involvement in the decision to be referred for investigation. This tended to be accompanied by a patient expectation for referral, however, to explain ongoing and un-resolving symptoms. It was also found that reasons for referral tended to be couched in non-specific terms rather than cancer investigation, even when the patient was on a cancer-specific pathway. CONCLUSION GPs should consider a more overt discussion with patients when referring them for further investigation of symptoms suspicious of cancer. This would align clinical practice with NICE guidelines and encourage more open discussion between GPs and primary care patients around cancer.