Suman Prinjha

Women's information needs about ductal carcinoma in situ before mammographic screening and after diagnosis: a qualitative study

Objectives: To explore the attitudes of women with screen-detected ductal carcinoma in situ (DCIS) towards information provision for mammographic screening. Setting: Respondents recruited throughout the UK during 2003–2004. Methods: Qualitative study using semi-structured interviews. Participants: Ten women diagnosed with DCIS as a result of mammographic screening. Results: None of the women with DCIS had heard of it before their diagnosis. Most would have liked more information about DCIS when invited for routine screening. Comprehensive information about the benefits and risks of mammographic screening, including the possibility of a DCIS diagnosis, would have enabled them to make a fully informed choice about attending for screening. Conclusion: DCIS is an inescapable outcome of mammographic screening and, until it is better understood, the screening industry needs to inform women about its existence and the lack of understanding of its natural history and management. Being alerted before screening to the possibility of a DCIS diagnosis and the uncertainty associated with it would better enable women to make fully informed decisions about whether to attend and could help to alleviate some of the distress women currently feel when diagnosed with DCIS.

Mapping patients’ experiences from initial symptoms to gout diagnosis: a qualitative exploration

Objective To explore patients’ experiences from initial symptoms to receiving a diagnosis of gout. Design Data from in-depth semistructured interviews were used to construct themes to describe key features of patients’ experiences of gout diagnosis. Participants and setting A maximum variation sample of 43 UK patients with gout (29 men; 14 women; age range 32–87 years) were recruited from general practices, rheumatology clinics, gout support groups and through online advertising. Results Severe joint pain, combined with no obvious signs of physical trauma or knowledge of injury, caused confusion for patients attempting to interpret their symptoms. Reasons for delayed consultation included self-diagnosis and/or self-medication, reluctance to seek medical attention, and financial/work pressures. Factors potentially contributing to delayed diagnosis after consultation included reported misdiagnosis, attacks in joints other than the first metatarsophalangeal joint, and female gender. The limitations in using serum uric acid (SUA) levels for diagnostic purposes were not always communicated effectively to patients, and led to uncertainty and lack of confidence in the accuracy of the diagnosis. Resistance to the diagnosis occurred in response to patients’ beliefs about the causes of gout and characteristics of the people likely to be affected. Diagnosis prompted actions, such as changes in diet, and evidence was found of self-monitoring of SUA levels. Conclusions This study is the first to report data specifically about patients’ pathways to initial consultation and subsequent experiences of gout diagnosis. A more targeted approach to information provision at diagnosis would improve patients’ experiences.

'A mastectomy for something that wasn't even truly invasive cancer'. Women's understandings of having a mastectomy for screen-detected DCIS: a qualitative study.

Objectives To explore womens understandings of having a mastectomy for screen-detected ductal carcinoma in situ (DCIS). Setting Participants recruited throughout the United Kingdom and interviewed in their own homes by an anthropologist. Methods Qualitative study using semi-structured interviews and thematic analysis. Thirty-five women with screen-detected DCIS were interviewed, of whom twenty had a mastectomy. Results A qualitative thematic analysis of womens understandings of having a mastectomy for DCIS identified four key themes: understandings of routine breast screening; uncertainty about DCIS and its natural progression; uncertainty about whether a mastectomy is justified for DCIS; information gaps and treatment decisions. Women were often concerned that a mastectomy for screen-detected DCIS was a ‘drastic’ treatment for an asymptomatic, precancerous condition of which they had been previously unaware. Some questioned why they were treated with such urgency, even suspecting that their clinicians were responding to targets. Conclusion Given the uncertainties about DCIS and its complexity, it is important that women have the information they need to make treatment decisions. Better information about the uncertainties and the rationale for using mastectomy as a treatment may help women to make better informed choices and feel more comfortable about their decisions.

How users of indwelling urinary catheters talk about sex and sexuality: a qualitative study.

Background An indwelling urinary catheter can solve the problem of incontinence and may be life-saving in individuals with retention, but it can cause problems such as infection and may have a negative impact on body image, sex, and sexuality. Aim To explore the individual’s perceptions of how a long-term urinary catheter can affect body image, sex, and sexuality; and to help GPs to discuss the subject in consultations. Design and setting Qualitative study of a diverse sample of individuals living with a long-term urinary catheter. Interviews took place all over the UK, usually in the individuals’ homes. Method Narrative interviews were audiorecorded, transcribed, and analysed thematically, using the constant comparative method. Results Some individuals said that sex was not an important part of their lives because of old age, illness, or the catheter. Others talked about how their catheter and their disability affected their sexual self-esteem, feelings of masculinity or femininity, and how the catheter caused pain, discomfort, or unexpected symptoms during sex. Many noted the lack of information on the subject and also said that health professionals were reluctant to talk about sex. For a minority a catheter was not a major problem in relation to sex. Conclusion Some individuals using a urinary catheter would benefit from information on how to have a sexual relationship with a catheter in place and a chance to discuss the subject with their doctors. GPs need to be aware that sex may matter to a person with a catheter and how illness, disability, and a catheter may affect sexuality.

Drawing on Accounts of Long-Term Urinary Catheter Use Design for the “Seemingly Mundane”

The design of the Foley catheter has not changed since 1937. Scientists interested in medical technology tend to focus on state-of-the-art designs for newsworthy specialties rather than the more mundane technologies of daily life. We interviewed 36 people living with a long-term urinary catheter in the United Kingdom, who described limitations of the current catheter design, including infections and complications and consequences for social life and relationships, and their perceptions of whose responsibility it was to improve the design. All took steps to hide the urine bag, but the need to use a catheter and urine bag had, for some, a very detrimental effect on social life and relationships. People living with long-term catheters are relatively isolated at home and dealing with many different underlying health problems, undermining opportunities to speak with a collective patient voice. Qualitative health researchers could act as a conduit to help stimulate new designs.

Comparing transurethral and suprapubic catheterization for long-term bladder drainage: A qualitative study of the patients' perspective

PURPOSE: To explore why men and women decide to have a suprapubic catheter, how the decision is made, and to compare peoples experiences of suprapubic and transurethral catheterization for long-term bladder drainage. DESIGN: Narrative interviews followed by thematic analysis. SUBJECTS AND SETTING: Thirty-six long-term catheter users living in England, Wales, or Scotland were interviewed. The sample included men and women from various socioeconomic backgrounds, with a wide range of conditions. They were aged 22 to 96 years (M = 57 years). METHODS: Interviews lasted between 1 and 3 hours; they were audiotaped and fully transcribed for analysis. A qualitative interpretive approach was taken, combining thematic analysis with constant comparison. RESULTS: Some respondents were satisfied with or preferred a urethral catheter; others preferred a suprapubic catheter because they perceived that suprapubic catheters led to fewer infections, were more hygienic, more comfortable, improved self-image, allowed a sense of control, and were better suited for sexual relations. Participants also mentioned the decision-making process, including how the decision was made to have a suprapubic catheter and where to insert the catheter at a particular point in the abdomen. Even with a suprapubic catheter, some worried about sex or were put off sexual intimacy because of the catheter. CONCLUSION: Our findings suggest that patients should be better informed before a suprapubic catheter is inserted and that issues such as sex should be raised in consultations when appropriate.

Why me? I don't fit the mould … I am a freak of nature: a qualitative study of women's experience of gout.

BackgroundGout is more common in men, and is often perceived by both patients and health practitioners to be a disorder of men, but its prevalence in women is increasing. Little is known about women’s experience of gout and the impact it has on their lives. It is important for practitioners to be aware of these areas, given the increasing numbers of women with gout they are likely to see in the future. This study aimed to explore women’s experiences of gout.MethodsA qualitative research design was used. Semi-structured interviews were conducted with 43 people, of whom 14 were women. Interviews were video and/or tape recorded and transcribed verbatim. Data from the interviews was first grouped into broad categories, followed by a more detailed thematic analysis and interpretation.ResultsParticipants’ ages ranged from 32 to 82. Nine participants were retired and five were in fulltime work. Four themes emerged: (1) experience of onset, help seeking and diagnosis (2) understanding and finding information about gout, (3) impact on identity, and (4) impact on roles and relationships.ConclusionsThe diagnostic process for women with gout can be uncertain due to lack of awareness of gout in women (by health care professionals and women themselves). Women do not have a good understanding of the condition and find it difficult to find information that feels relevant to them. Gout has a major impact on women’s identity and on their roles and relationships. These findings are of importance to health care professionals dealing with women with potential gout and those with an existing diagnosis.

A comparison of blood pressure in community pharmacies with ambulatory, home and general practitioner office readings: Systematic review and meta-analysis

Background: Blood pressure (BP) readings are traditionally taken in a clinic setting, with treatment recommendations based on these measurements. The clinical interpretation of BP readings taken in community pharmacies is currently unclear. This study aimed to systematically review all literature comparing community pharmacy BP (CPBP) readings with ambulatory BP monitoring (ABPM), home BP monitoring and general practitioner clinic readings. Method: Studies were included if they compared CPBP with at least one other measurement modality used for the diagnosis or management of hypertension. Mean CPBP readings were compared with other measurement modalities and summarized using random-effects meta-analyses. The primary outcome was to compare CPBP with gold standard ABPM readings. Results: Searches generated 3815 studies of which eight were included in the meta-analyses. The mean systolic CPBP-daytime ABPM difference was small [+1.6 mmHg (95% confidence interval −1.2 to 4.3) three studies, n = 319]. CPBP was significantly higher than 24-h ABPM [+7.8 mmHg (95% confidence interval 1.5–14.1) three studies n = 429]. Comparisons with general practitioner clinic readings (six studies, n = 2100) were inconclusive with significant heterogeneity between studies. CPBP and home BP monitoring readings (five studies, n = 1848) were nonsignificantly different. Diastolic comparisons mirrored systolic comparisons in all but the CPBP-daytime ABPM comparison, where CPBP was significantly higher. Conclusion: Current evidence around the clinical interpretation of CPBP is inconclusive. Although this review suggests that adopting the 135/85 mmHg threshold for hypertension might be reasonable and potentially result in a higher sensitivity for detecting patients with truly raised BP in pharmacies, the impact of this lower threshold on increased referrals to general practice clinics must be considered.

Hypertension referrals from community pharmacy to general practice: multivariate logistic regression analysis of 131 419 patients

Background The burden of hypertension in primary care is high, and alternative models of care, such as pharmacist management, have shown promise. However, data describing outcomes from routine consultations between pharmacists and patients with hypertension are lacking. Aim To identify factors associated with referral of patients from pharmacies to general practice within the first 2 weeks of starting a new antihypertensive medication. Design and setting Multivariate logistic regression conducted on data from community pharmacies in England. Method Data were obtained from the New Medicine Service between 2011 and 2012. Analyses were conducted on 131 419 patients. In all, 15 predictors were included in the model, grouped into three categories: patient-reported factors, demographic factors, and medication-related factors. Results Mean patient age was 65 years (±13 years), and 85% of patients were of white ethnicity. A total of 5895 (4.5%) patients were referred by a pharmacist to a GP within the first 2 weeks of starting a new antihypertensive medication. Patients reporting side effects (adjusted odds ratio [OR] 11.60, 95% confidence interval [CI] = 10.85 to 12.41) were most likely to be referred. Prescriptions for alpha-blockers were associated with referral (adjusted OR 1.28, 95% CI = 1.12 to 1.47), whereas patients receiving angiotensin-II receptor blockers were less likely to be referred (adjusted OR 0.89, 95% CI = 0.80 to 0.99). Conclusion Most patients were followed up by pharmacists without the need for referral. Patient-reported side effects, medication-related concerns, and the medication class prescribed influenced referral. These data are reassuring, in that additional pharmacist involvement does not increase medical workload appreciably, and support further development of pharmacist-led hypertension interventions.

CAUTIOUS PATIENTS, CAREFUL PHARMACISTS. DO YOU HAVE TO TAKE YOUR NEW ANTI-HYPERTENSIVE MEDICATION TO EXPERIENCE THEIR SIDE EFFECTS?

Objective: The burden of hypertension in primary care is high and alternative models of care, such as pharmacist management, have shown promise. However, data describing outcomes from routine consultations between pharmacists and hypertensive patients are lacking. The aim of this study was to identify factors associated with referral of patients from pharmacies to general practice (GP), within the first two weeks of starting a new anti-hypertensive medication. Figure. No caption available. Design and method: Multivariate logistic regression conducted on data from community pharmacies in all regions of England. Data were obtained from the ’New Medicines Service’ conducted by community pharmacists between 2011 and 2012. Analyses were conducted on 131,419 patients. Fifteen predictors were included in the model, grouped into 3 categories: patient reported factors, demographic factors and medication related factors. A subsequent content analysis of 1,200 pharmacist clinical consultation notes were also conducted to detect any variation in pharmacist care delivery and to better understand the reasons for referral. Results: Mean patient age was 65 (±13 years) and 85% of patients were of white ethnicity. A total of 5,895 (4%) patients were referred by a pharmacist to a GP within the first two weeks of starting a new anti-hypertensive medication. Patients reporting side effects (adjusted OR 11.6 [95% CI 10.8–12.4]) were most likely to be referred. Prescriptions for alpha-blockers were associated with referral (adjusted OR 1.28 [95% CI 1.12–1.47]) while patients receiving angiotensin-II receptor blockers were less likely to be referred (adjusted OR 0.89 [95% CI 0.80–0.99]). The content analysis highlighted that providing the necessary assistance, reassurance and follow-up were features seen among consultations resulting in pharmacist management without the need for referral to general practice. However, variation in patient management was observed, highlighting the need to improve the advice given to patients who report medication concerns during early pharmacotherapy. Conclusions: Most patients were followed up by pharmacists without the need for referral. Patient reported side effects, medication related concerns and medication class prescribed influenced referral. These data are reassuring that additional pharmacist involvement does not increase medical workload appreciably and support further development of pharmacist-led hypertension interventions.