How doctors record breaking bad news in ovarian cancer

Revealing the diagnosis of cancer to patients is a key event in their cancer journey. At present, there are no minimal legal recommendations for documenting such consultations. We reviewed the Hospital records of 359 patients with epithelial ovarian cancer in the Mersey Area between 1992 and 1994. We identified the following factors: age, hospital, postcode, surgeon, stage of disease and survival. These were compared to information recorded at the time of the interview such as person present, descriptive words used, prognosis, further treatment and emotional response. In 11.6%, there was no information recorded in the notes. The diagnosis was recorded in 304 (94.7%), prognosis in 66 (20.6%) and collusion with relatives in 33 (10.3%). A total of 42 separate words/phrases were identified relating to diagnosis; cancer was recorded in 60 (19.6%). Collusion was three times as common in the patients over 65 years (17.9 vs 5.7%, P=0.001). There was a reduction in the number of diagnostic words recorded in the patients over 65 years (90.3 vs 98.3%, P=0.002) and by type of surgeon (P=0.001). Information was often poorly recorded in the notes. We have shown that the quality of information varies according to patient age, surgeon and specialty

An analysis of first-time enquirers to the CancerBACUP information service: variations with cancer site, demographic status and geographical location

A retrospective comparison of cancer incidence data and, where relevant, population data with 16 955first-time users (patients, relatives and friends) of a national cancer information service (CancerBACUP) during the period April1995 to March 1996 is presented. The number of events observed was compared with the number of events expected, were the nationalrates of cancer incidence and population demographics apply. Standardized incidence ratios (SIRs) (observed – expectedratios) were used to indicate any differences. Statistically significant differences (P< 0.001) in the observed andexpected sex, age and primary site distribution of patients enquired about were found. Statistically significant differences(P< 0.001) were also identified for the age, employment status, socioeconomic class and geographical location offirst-time enquirers (patients, relatives and friends). Enquiries about brain, testis and breast cancers and non-Hodgkin'slymphoma (NHL) were substantially higher than expected; enquiries about bladder, lung, stomach and colorectal cancers were muchlower than expected. As the service is provided via a freephone number, it is available to all, and users might be expected to berandomly distributed across the variables listed. The underlying reasons for the differences identified need to be investigated,and the role of information in the care of cancer patients should be formally evaluated. © 1999 Cancer Research Campaig

Screening for psychological distress in patients with lung cancer: results of a clinical audit evaluating the use of the patient Distress Thermometer

Patients with lung cancer frequently suffer psychological distress and guidelines in the United Kingdom recommend screening of all cancer patients for this problem. The audit investigated use of the Distress Thermometer in terms of staff adherence to locally developed guidelines, patient willingness to use the tool, its impact on referral rates to clinical psychology services and concordance between the tool and the clinical assessment. Use of the Distress Thermometer was audited over a 3-month period in one lung cancer outpatient clinic. Referrals to clinical psychology services in response to clearly delineated referral indicators were assessed. Patient-reported outcomes were compared with practitioner assessment of need during clinical consultations to see whether the tool was measuring distress effectively. Thirty three of 34 patients used the Distress Thermometer during the audit period. Ten reported distress levels above 4 in the emotional or family problems domains. On ten occasions, the clinical interview identified problems not elicited by the Distress Thermometer. Guidelines were adhered to by staff, and patients were offered information about local support services and referral to clinical psychology services where indicated. Whilst all patients were happy to receive written information about further sources of support, none wanted to be referred to psychological services at that time. The Distress Thermometer is acceptable to patients with lung cancer in outpatient settings but it did not increase referrals for psychological support. Staff found it to be a useful tool in opening up communication about patient issues although it should not replace a comprehensive clinical interview

Differences in enquiries to CancerBACUP information service by living arrangements.

The study's aim was to ascertain whether living alone is associated with the use of an independent cancer information service. An Enquirer Record Form is completed for every fifth enquirer to the service; two questions asking whether enquirers, patients, relatives/friends were living alone or with others where asked in association with the routine questions. A total of 552 callers were asked in a 5-week period, 77% of all callers in these categories. The main findings were: (1) the proportion of enquirers living alone was similar to the general population; (2) among enquirers, patients were more likely to live alone than relatives/friends; (3) requests differed by whether living alone and by type of enquirer, for example, significantly more people living with others requested emotional support than those living alone, and this contrast was most marked for patients than relatives/friends. This study, notwithstanding its limitations, highlights some of the differences in the use of a service and demonstrates the complexity of information and support seeking

A critical analysis of national policies, systems, and structures of patient empowerment in England and Greece

Markella Boudioni,1 Susan McLaren,2 Graham Lister2 1NIHR Imperial Biomedical Research Centre &amp; Patient Experience Research Centre, Imperial College London, 2Institute for Leadership and Service Improvement, Faculty of Health and Social Care, London South Bank University, London, UK Background: Comparison of patient empowerment (PE) policies in European countries can provide evidence for improvement and reform across different health systems. It may also influence patient and public involvement, patient experience, preference, and adherence.Objective: The objective of this study was to compare PE within national policies, systems, and structures in England and Greece for achieving integrated people-centered health services.Methods: We performed a critical search and review of policy and legislation papers in English and Greek languages. This included 1) general health policy and systems papers, 2) PE, patient and/or public involvement or patients&rsquo; rights policy and legislation (1990&ndash;2015), and 3) comparative or discussion papers for England and/or Greece.Results: A total of 102 papers on PE policies, systems, and structures were identified initially; 80&nbsp;papers were included, in which 46 were policy, legislative, and discussion papers about England, 21 were policy, legislation, and discussion papers about Greece, and 13 were comparative or discussion papers including both the countries. In England, National Health Service policies emphasized patient-centered services, involvement, and empowerment, with recent focus on patients&rsquo; rights; while in Greece, they emphasized patients&rsquo; rights and quality of services, with recent mentions on empowerment. The health ombudsman is a very important organization across countries; however, it may be more powerful in Greece, because of the nonexistence of local mediating bodies. Micro-structures at trusts/hospitals are comparable, but legislation gives more power to the local structures in Greece.Conclusion: PE policies and systems have been developed and expressed differently in these countries. However, PE similarities, comparable dimensions and mechanisms, were identified. For both the countries, comparative research and these findings could be beneficial in building connections and relationships, contributing to wider European and international developments on PE, involvement, and patients&rsquo; rights and further impact on patient preferences and adherence. Keywords: patient empowerment, patient involvement, patients&rsquo; rights, England, Greece, national health policies&nbsp

Listening to those on the frontline: service users&amp;#39; experiences of London tuberculosis services

Markella Boudioni, Susan McLaren, Ruth Belling, Leslie WoodsInstitute for Leadership and Service Improvement, Faculty of Health and Social Care, London South Bank University, London, UKAim: To explore tuberculosis (TB) service users&amp;#39; experiences and satisfaction with care provision.Background: Thirty-nine percent of all new UK TB cases occur in London. Prevalence varies considerably between and within boroughs. Overall, research suggests inadequate control of London&amp;#39;s TB transmission; TB has become a health care priority for all London Primary Care Trusts. Service users&amp;#39; experiences and satisfaction with care provision have not been explored adequately previously.Methods: A qualitative research design, using semi-structured face-to-face interviews was used. Ten service users, purposively selected in key risk groups across London, were interviewed. All interviews were digitally recorded with users&amp;#39; permission, transcribed verbatim, and analyzed thematically.Results: Participants were treated in local hospitals for 6&amp;ndash;12 months. Treatment was administered by TB nurses to inpatients and outpatients receiving directly observed therapy in consultation with medical staff and home visits for complex cases. Two participants did not realize the importance of compliance. Overall, they were satisfied with many TB services&amp;#39; aspects, communication, and service organization. Early access, low suspicion index amongst some GPs, and restricted referral routes were identified as service barriers. Other improvement areas were information provision on drug side effects, diet, nutritional status, and a few health professionals&amp;#39; attitudes. The effects on people varied enormously from minimal impact to psychological shock; TB also affected social and personal aspects of their life. With regard to further support facilities, some positive views on managed accommodation by TB-aware professionals for those with accommodation problems were identified.Conclusion: This first in-depth study of TB service users&amp;#39; experiences across London offers valuable insights into service users&amp;#39; experiences, providing information and recommendations for a strategic framework for TB service organization and delivery. Overall, further research is needed; TB services &amp;ndash; local, national, and international &amp;ndash; need to be more closely aligned with service users&amp;#39; complex needs.Keywords: qualitative study, interviews, TB, service organization, services improvemen

More than what the eye can see: the emotional journey and experience of powerlessness of integrated care service users and their carers

Markella Boudioni,1 Nina Hallett,2 Cristina Lora,2 Wendy Couchman2 1Patient Experience Research Centre (PERC) and NIHR Imperial Biomedical Research Centre (BRC), Imperial College London, 2Faculty of Health and Social Care, London South Bank University, London, UK Purpose: This article presents the emotional journey and experience of powerlessness of integrated care service users and carers.&nbsp; Materials and methods: The experiences of seven integrated care service users and carers affected by complex conditions in a London borough were captured as video stories. The integrated care service coordinated a system of health and social care: primary care, community matrons, social workers, and the voluntary sector. The service was designed to respond to identified cases of high-risk individuals with long-term, multiple, and age-related conditions needing preventive interventions. The video stories were analyzed by researchers in collaboration with service users using a visual thematic qualitative approach. This report is part of an independent analysis of the integrated care service evaluation that used the experience-based codesign model.&nbsp; Results: The findings are presented in the respective contexts of people with complex conditions and their carers. The overwhelming feelings and emotions of both were loss of control and power throughout their emotional journey, with family carers adopting a protective attitude toward the patients. Their experience of powerlessness was variable throughout their emotional journey. They were affected more strongly when in need of extra help and support and while they were undergoing the process of receiving extra services. When they were receiving help and support outside and within hospitals, some participants were empowered, gaining skills and knowledge by being provided with the mechanisms to cope with their condition at present and in the future.&nbsp; Conclusion: Feelings of powerlessness were very common among integrated care service users and their carers. Powerless/empowerment has been poorly investigated to date. Visual methods and collaborative visual analysis with service users have proved to be powerful methods too, but have been rarely reported. Keywords: visual methods, collaborative research, patients, complex conditions, UK&nbsp

An evaluation of a cancer counselling service

The CancerBACUP London Counselling Service offered short-term face-to-face counselling to self-referred cancer patients and their relatives and friends, provided by experienced supervised counsellors working within a humanistic theoretical framework. This study aimed to identify its clients' characteristics, use of the service, extent of perceived benefits and satisfaction with the service. Socio-demographic data were collected in Data Sheets from all 384 clients who booked an appointment over 18 months; they were predominantly female, &lt; 50 years old and from non-manual social classes. Significantly more people in those classes and in the 30–59 age group attended three or more sessions. Three hundred and nine clients who attended at least once were sent an Evaluation Form; 142 responded. The probability of the Evaluation Forms' return was greater for those who had completed more sessions; the great majority of respondents felt that they had benefited, and were satisfied with the service. This study, notwithstanding its limitations, shows that a short course of counselling may be perceived by clients to be helpful; it also raises other issues of value to those involved in cancer services and/or counselling provision.<br/