Elizabeth Davies

Hearing the patient’s voice? Factors affecting the use of patient survey data in quality improvement

Objective: To develop a framework for understanding factors affecting the use of patient survey data in quality improvement. Design: Qualitative interviews with senior health professionals and managers and a review of the literature. Setting: A quality improvement collaborative in Minnesota, USA involving teams from eight medical groups, focusing on how to use patient survey data to improve patient centred care. Participants: Eight team leaders (medical, clinical improvement or service quality directors) and six team members (clinical improvement coordinators and managers). Results: Respondents reported three types of barriers before the collaborative: organisational, professional and data related. Organisational barriers included lack of supporting values for patient centred care, competing priorities, and lack of an effective quality improvement infrastructure. Professional barriers included clinicians and staff not being used to focusing on patient interaction as a quality issue, individuals not necessarily having been selected, trained or supported to provide patient centred care, and scepticism, defensiveness or resistance to change following feedback. Data related barriers included lack of expertise with survey data, lack of timely and specific results, uncertainty over the effective interventions or time frames for improvement, and consequent risk of perceived low cost effectiveness of data collection. Factors that appeared to have promoted data use included board led strategies to change culture and create quality improvement forums, leadership from senior physicians and managers, and the persistence of quality improvement staff over several years in demonstrating change in other areas. Conclusion: Using patient survey data may require a more concerted effort than for other clinical data. Organisations may need to develop cultures that support patient centred care, quality improvement capacity, and to align professional receptiveness and leadership with technical expertise with the data.

Evaluating the use of a modified CAHPS® survey to support improvements in patient-centred care: lessons from a quality improvement collaborative

Objectives  To evaluate the use of a modified Consumer Assessment of Healthcare Providers and Systems (CAHPS®) survey to support quality improvement in a collaborative focused on patient‐centred care, assess subsequent changes in patient experiences, and identify factors that promoted or impeded data use.

Breast cancer incidence, stage, treatment and survival in ethnic groups in South East England

Studies from the US have shown variations in breast cancer incidence, stage distribution, treatment and survival between ethnic groups. Data on 35 631 women diagnosed with breast cancer in South East England between 1998 and 2003 with self-assigned ethnicity information available were analysed. Results are reported for White, Indian, Pakistani, Bangladeshi, Black Caribbean, Black African and Chinese women. Age-standardised breast cancer incidence rate ratios, patterns of stage of disease at diagnosis, treatment, overall and breast cancer-specific survival were examined. All ethnic groups studied had lower age-standardised breast cancer incidence rates than White women, with Bangladeshi women having the lowest rate ratio (0.23, 95% CI: 0.20–0.26). White women were the most likely to have a stage recorded at diagnosis (adjusted proportion 75%), and least likely to be diagnosed with metastatic disease (7%). Black African women were the least likely to have a record of cancer surgery (63%) or hormone therapy (32%), and most likely to receive chemotherapy (38%). After fully adjusting for age, socioeconomic deprivation, stage of disease and treatment received, there was no significant variation in breast cancer-specific survival. However, Black African women had significantly worse overall survival (hazard ratio 1.24, P=0.025). These findings suggest that a strategy of earlier detection should be pursued in Black and South Asian women.

Cancer diagnosis in people with severe mental illness: practical and ethical issues

There has been increasing recognition of the high physical morbidity in patients with severe mental illness, but little has been written about cancer in these patients. Therefore, we review the published work on risk of cancer in patients with severe mental illness, treatment challenges, and ethical issues. Severe mental illness is associated with behaviours that predispose an individual to an increased risk of some cancers, including lung and breast cancer, although lower rates of other cancers are reported in this population. Severe mental illness is also associated with disparities in screening for cancer and with higher case-fatality rates. This higher rate is partly due to the specific challenges of treating these patients, including medical comorbidity, drug interactions, lack of capacity, and difficulties in coping with the treatment regimen as a result of psychiatric symptoms. To ensure that patients with severe mental illness receive effective treatment, inequalities in care need to be addressed by all health-care professionals involved, including those from mental health services and the surgical and oncology teams.

The epidemiology and survival of extrapulmonary small cell carcinoma in South East England, 1970-2004.

BackgroundExtrapulmonary small cell carcinoma (EPSCC) is a rare cancer and few studies describe its epidemiology. Our objectives were to compare the incidence and survival of EPSCC in South East England with small cell carcinoma of the lung (SCLC), to determine the most common anatomical presenting sites for EPSCC and to compare survival in EPSCC by disease stage and site of diagnosis.MethodsWe used data from the Thames Cancer Registry database for South East England between 1970 and 2004 to determine the incidence, most common anatomical sites, and survival by site, and stage of EPSCC. 1618 patients registered with EPSCC were identified. We calculated the age-standardised incidence rate for EPSCC using the European standard population and compared this to that for SCLC. We calculated survival using the Kaplan-Meier method for EPSCC and SCLC, and reported 3-year survival for different EPSCC anatomical sites and disease stages.ResultsThe incidence of EPSCC was much lower than for SCLC, similar in males and females, and stable throughout the study period, with incidence rates of 0.45 per 100,000 in males and 0.37 in females during 2000–2004. In general, patients with EPSCC had a better 3-year survival (19%) than SCLC (5%). The most common anatomical sites for EPSCC were oesophagus (18%), other gastrointestinal (15%), genitourinary (20%), head and neck (11%), and breast (10%). Breast EPSCC had the best 3-year survival (60%) and gastrointestinal EPSCC the worst (7%).ConclusionThis study suggests that EPSCC has a stable incidence and confirms that it presents widely, but most commonly in the oesophagus and breast. Site and extent of disease influence survival, with breast EPSCC having the best prognosis. Further studies using standardised diagnosis, prospective case registers for uncommon diseases and European cancer registries are needed to understand this disease.

Using patients' experiences to identify priorities for quality improvement in breast cancer care: patient narratives, surveys or both?

BackgroundPatients’ experiences have become central to assessing the performance of healthcare systems worldwide and are increasingly being used to inform quality improvement processes. This paper explores the relative value of surveys and detailed patient narratives in identifying priorities for improving breast cancer services as part of a quality improvement process.MethodsOne dataset was collected using a narrative interview approach, (n = 13) and the other using a postal survey (n = 82). Datasets were analyzed separately and then compared to determine whether similar priorities for improving patient experiences were identified.ResultsThere were both similarities and differences in the improvement priorities arising from each approach. Day surgery was specifically identified as a priority in the narrative dataset but included in the survey recommendations only as part of a broader priority around improving inpatient experience. Both datasets identified appointment systems, patients spending enough time with staff, information about treatment and side effects and more information at the end of treatment as priorities. The specific priorities identified by the narrative interviews commonly related to ‘relational’ aspects of patient experience. Those identified by the survey typically related to more ‘functional’ aspects and were not always sufficiently detailed to identify specific improvement actions.ConclusionsOur analysis suggests that whilst local survey data may act as a screening tool to identify potential problems within the breast cancer service, they do not always provide sufficient detail of what to do to improve that service. These findings may have wider applicability in other services. We recommend using an initial preliminary survey, with better use of survey open comments, followed by an in-depth qualitative analysis to help deliver improvements to relational and functional aspects of patient experience.

Hospital volume and survival in oesophagectomy and gastrectomy for cancer.

BACKGROUND High volume upper gastrointestinal cancer hospitals demonstrate improved postoperative mortality rates, but the impact on survival is unclear. This population-based cohort study explores the effect of hospital volume on survival following upper gastrointestinal cancer surgery. PATIENTS AND METHODS This study used a population-based cohort of 3866 patients who underwent surgery for oesophageal or gastric cancer between 1998 and 2008 with follow-up until December 2008. RESULTS Hospital volume ranged from 1 to 68 cases/year. Overall, 5-year survival was 27%. Increasing age and advanced stage of disease were independently correlated with shorter survival. High hospital volume was significantly and independently correlated with improved 30-day mortality postoperatively (P<0.001), but not with survival beyond 30 days. CONCLUSION The correlation between hospital volume and improved 30-day mortality following oesophageal and gastric cancer surgery supports the centralisation of upper gastrointestinal cancer surgery services. The low survival in both high and low volume hospitals beyond 30 days highlights the need for increasing earlier diagnosis and optimising approaches to radical treatment.

Malignant cerebral glioma II: Perspectives of patients and relatives on the value of radiotherapy.

Abstract Objective: To explore the experiences of patients and relatives after the diagnosis and treatment of malignant cerebral glioma. Design: Two year prospective study with home interviews. Setting: Six neurosurgery and radiotherapy centres in London. Subjects: 75 patients and 66 close relatives interviewed at diagnosis, 58 patients interviewed after radiotherapy, and 27 interviewed after recurrence. Main outcome measures: Awareness of likely prognosis, distress, dissatisfaction with radiotherapy, and perception of severe problems in everyday life. Results: As they began radiotherapy most patients understood that they suffered from a brain tumour (95%; 71/75), but only one quarter (19/75) seemed fully aware of the poor prognosis. Others were unaware (43%; 32/75) or only partly aware (32%; 24/75). The more aware patients were more distressed. Relatives were three times more likely to be aware of the prognosis (67%; 44/66) and were more distressed. Although 39% (29/75) of patients initially made negative comments about radiotherapy, only 17% (13/75) were completely dissatisfied. The decision to accept radiotherapy could be discussed directly with 19 fully aware patients. Twelve found radiotherapy acceptable if it were medically advised or if it improved survival. Assessed by their own reports of problems only 40% of patients achieved a period of stability or remission, yet dissatisfaction with treatment did not increase. Conclusion: Most patients with malignant glioma initially seemed unaware or only partly aware of the poor prognosis. Relatives were more aware, more distressed, and often concerned to protect patients from full awareness, which made it difficult to explore with patients directly the possible trade off between quality and length of life. Conceptualising the question as a rational choice ignores the social and emotional context of life threatening disease. Key messages In general, relatives are more distressed than patients and more likely to be aware of the poor prognosis but tend to want to protect patients from this knowledge Communication with patients needs to take into account their need to make informed decisions about treatment and the implications of the disclosure of such information for communication with families Patients who initially have better WHO clinical performance status (0–1) are most likely to report improving or remaining stable after radiotherapy. Overall only 40% of a non-trial population thus achieve a remission

A systematic review of barriers to early presentation and diagnosis with breast cancer among black women

Objective To explore barriers to early presentation and diagnosis with breast cancer among black women. Design Systematic review. Methods We searched multiple bibliographic databases (January 1991–February 2013) for primary research, published in English, conducted in developed countries and investigating barriers to early presentation and diagnosis with symptomatic breast cancer among black women (≥18 years). Studies were excluded if they did not report separate findings by ethnic group or gender, only reported differences in time to presentation/diagnosis, or reported on interventions and barriers to cancer screening. We followed Cochrane and PRISMA guidance to identify relevant research. Findings were integrated through thematic synthesis. Designs of quantitative studies made meta-analysis impossible. Results We identified 18 studies (6183 participants). Delay was multifactorial, individual and complex. Factors contributing to delay included: poor symptom and risk factor knowledge; fear of detecting breast abnormality; fear of cancer treatments; fear of partner abandonment; embarrassment disclosing symptoms to healthcare professionals; taboo and stigmatism. Presentation appears quicker following disclosure. Influence of fatalism and religiosity on delay is unclear from evidence in these studies. We compared older studies (≥10 years) with newer ones (<10 years) to determine changes over time. In older studies, delaying factors included: inaccessibility of healthcare services; competing priorities and concerns about partner abandonment. Partner abandonment was studied in older studies but not in newer ones. Comparisons of healthy women and cancer populations revealed differences between how people perceive they would behave, and actually behave, on finding breast abnormality. Conclusions Strategies to improve early presentation and diagnosis with breast cancer among black women need to address symptom recognition and interpretation of risk, as well as fears of the consequences of cancer. The review is limited by the paucity of studies conducted outside the USA and limited detail reported by published studies preventing comparison between ethnic groups.

Incidence and survival of oesophageal and gastric cancer in England between 1998 and 2007, a population-based study

BackgroundMajor changes in the incidence of oesophageal and gastric cancers have been reported internationally. This study describes recent trends in incidence and survival of subgroups of oesophageal and gastric cancer in England between 1998 and 2007 and considers the implications for cancer services and policy.MethodsData on 133,804 English patients diagnosed with oesophageal and gastric cancer between 1998 and 2007 were extracted from the National Cancer Data Repository. Using information on anatomical site and tumour morphology, data were divided into six groups; upper and middle oesophagus, lower oesophagus, oesophagus with an unspecified anatomical site, cardia, non-cardia stomach, and stomach with an unspecified anatomical site. Age-standardised incidence rates (per 100,000 European standard population) were calculated for each group by year of diagnosis and by socioeconomic deprivation. Survival was estimated using the Kaplan-Meier method.ResultsThe majority of oesophageal cancers were in the lower third of the oesophagus (58%). Stomach with an unspecified anatomical site was the largest gastric cancer group (53%). The incidence of lower oesophageal cancer increased between 1998 and 2002 and remained stable thereafter. The incidence of cancer of the cardia, non-cardia stomach, and stomach with an unspecified anatomical site declined over the 10 year period. Both lower oesophageal and cardia cancers had a much higher incidence in males compared with females (M:F 4:1). The incidence was also higher in the most deprived quintiles for all six cancer groups. Survival was poor in all sub-groups with 1 year survival ranging from 14.8-40.8% and 5 year survival ranging from 3.7-15.6%.ConclusionsAn increased focus on prevention and early diagnosis, especially in deprived areas and in males, is required to improve outcomes for these cancers. Improved recording of tumour site, stage and morphology and the evaluation of focused early diagnosis programmes are also needed. The poor long-term survival reinforces the need for early detection and multidisciplinary care.