Susan Catt

Multidisciplinary teams in cancer care: are they effective in the UK?

Cancer care can be complex, and given the wide range and numbers of health-care professionals involved, an enormous potential for poor coordination and miscommunication exists. Multidisciplinary teams (MDTs) should improve coordination, communication, and decision making between health-care team members and patients, and hopefully produce more positive outcomes. This review describes the many practical barriers to the successful implementation of MDT working, and shows that despite an increase in the delivery of cancer services via this method, research showing the effectiveness of MDT working is scarce.

Psychosocial and supportive-care needs in high-grade glioma

The diagnosis and management of high-grade glioma has profound effects on patients and their families. Guidance issued by the UK National Institute of Health and Clinical Excellence in 2006 highlighted the lack of good studies of palliative care for patients with this disease. We describe new studies published from 2000 to 2007. High-grade glioma is undoubtedly a challenging research area, and many studies are poorly defined and have small and biased samples. Nevertheless the data reveal this to be a heterogeneous group of patients with complex needs that differ from those of patients with other cancers. Improvements in care require a united input from neurology and neurosurgery, oncology, and palliative care. The main research priorities are the development and assessment of psychosocial or supportive interventions and the investigation of service provision of specialist palliative and end-of-life care, which have hitherto been neglected.

What Oncologists Believe They Said and What Patients Believe They Heard: An Analysis of Phase I Trial Discussions

UNLABELLED PURPOSE; Evaluation of the communication and informed consent process in phase I clinical trial interviews to provide authentic, practice-based content for inclusion in a communication skills training intervention for health care professionals. PATIENTS AND METHODS Seventeen oncologists and 52 patients from five United Kingdom cancer centers consented to recording of phase I trial discussions. Following each consultation, clinicians completed questionnaires indicating areas they felt they had discussed, and researchers conducted semistructured interviews with patients examining their recall and understanding. Patients and oncologists also completed the Life Orientation Test-Revised questionnaire, measuring predisposition toward optimism. Independent researchers coded the consultations identifying discussion of key information areas and how well this was done. Observed levels of agreement were analyzed for each consultation between oncologist-coder, oncologist-patient, and patient-coder pairs. RESULTS In several key areas, information was either missing or had been explained but was interpreted incorrectly by patients. Discussion of prognosis was a frequent omission, with patients and coders significantly more likely to agree that oncologists had not discussed it (odds, 4.8; P < .001). In contrast, coders and oncologists were more likely to agree that alternate care plans to phase I trial entry had been explained (odds, 2.5; P = .023). CONCLUSION These data indicate that fundamental components of communication and information sharing about phase I trial participation are often missing from interviews. Important omissions included discussion of prognosis and ensuring patient understanding about supportive care. These findings will inform educational initiatives to assist communication about phase I trials.

Patients' and oncologists' views on the treatment and care of advanced ovarian cancer in the UK: results from the ADVOCATE study

Background:Most patients presenting with advanced ovarian cancer (AOC) eventually relapse. Symptom palliation, maintenance of quality of life (QoL) and prolongation of life are primary therapeutic goals.Methods:Sixty-six UK oncologists completed an online survey about AOC management. Two hundred and two patients were interviewed about care, treatment experiences and expectations.Results:Prior to diagnosis, 34% (69 out of 202) of women had ⩾3 symptoms associated with AOC. Twenty-one per cent (43 out of 202) thought poor symptom recognition by general practitioners (GPs) delayed diagnosis. Amelioration of side effects experienced was variable, for example, only 54% (68 out of 127) distressed by alopecia had received sufficient information about it. Clinicians were asked ‘What minimum gain in progression-free survival (PFS) would make you feel it worthwhile to offer maintenance therapy?’; 48% (24 out of 50) indicated 5–6 months, but 52% (26 out of 50) believed patients would find PFS of 3–4 months acceptable. When patients were presented with hypothetical scenarios, 33% (52 out of 160) would require 1–2 months extra life, 6% (10 out of 160) 3–4 months, 31% (49 out of 160) 5–6 months, and 31% (49 out of 160) ⩾7 months. However, 86% (173 out of 202) would accept treatment that improved QoL without prolongation of life. When asked what was most important, 33% (67 out of 201) said QoL, 9% (19 out of 201) length of life and 57% (115 out of 201) said both were equally important.Conclusion:Clinicians’ and patients’ experiences, expectations and priorities about OC management may differ.

A UK-wide survey of follow-up practices for patients with high-grade glioma treated with radical intent

RATIONALE AND OBJECTIVE High-grade glioma profoundly affects patients and their families. The best ongoing care for patients completing radical treatment is uncertain. To address this issue a UK-wide audit surveying the follow-up practices of multidisciplinary cancer teams was conducted. METHOD An online survey package was used with a paper version available. RESULTS Of 102 clinicians approached 86 replied, a response rate of 84%. Three-monthly outpatient department appointments led by an oncologist and a specialist nurse were the norm, but more controversially, some centres conduct joint clinics with the whole neurosurgical/oncology team present or available. Nurse-led telephone follow-up in place of hospital visits is uncommon. Regular scanning is conducted despite the clinical benefits being contentious. Access to a range of allied services providing supportive care is considered, but the actual levels of need and the efficiency with which they are delivered require further investigation. CONCLUSIONS The picture of UK follow-up practices revealed by this survey demonstrates that research is now needed to determine what preferences patients and families have for follow-up and their satisfaction with these.

Patient-reported outcome measures of the impact of cancer on patients’ everyday lives: a systematic review

PurposePatients with advanced disease are living longer and commonly used patient-reported outcome measures (PROMs) may miss relevant elements of the quality of extended survival. This systematic review examines the measures used to capture aspects of the quality of survival including impact on patients’ everyday lives such as finances, work and family roles.MethodsSearches were conducted in MEDLINE, EMBASE, CINAHL and PsycINFO restricted to English language articles. Information on study characteristics, instruments and outcomes was systematically extracted and synthesised. A predefined set of criteria was used to rate the quality of studies.ResultsFrom 2761 potentially relevant articles, 22 met all inclusion criteria, including 10 concerning financial distress, 3 on roles and responsibilities and 9 on multiple aspects of social well-being. Generally, studies were not of high quality; many lacked bias free participant selection, had confounding factors and had not accounted for all participants. High levels of financial distress were reported and were associated with multiple demographic factors such as age and income. There were few reports concerned with impacts on patients’ roles/responsibilities in everyday life although practical and emotional struggles with parenting were identified. Social difficulties were common and associated with multiple factors including being a caregiver. Many studies were single time-point surveys and used non-validated measures. Exceptions were employment of the COST and Social Difficulties Inventory (SDI), validated measures of financial and social distress respectively.ConclusionsImpact on some important parts of patients’ everyday lives is insufficiently and inconsistently captured. Further PROM development focussing on roles and responsibilities, including work and caring for dependents, is warranted.Implications for Cancer SurvivorsFactors such as finances, employment and responsibility for caring for dependants (e.g. children and elderly relatives) can affect the well-being of cancer survivors. There is a need to ensure that any instruments used to assess patients’ social well-being are broad enough to include these areas so that any difficulties arising can be better understood and appropriately supported.

Patients' and staff's experiences of multidisciplinary follow-up for high-grade glioma after radical radiotherapy

Meeting the complex needs of patients with high-grade glioma requires multidisciplinary input. How best to provide care after initial treatment ends is contentious. This study explored the experiences of patients and staff at one UK centre where regular multidisciplinary clinics and brain scanning is provided. In-depth interviews conducted with 10 patients and six staff were transcribed and analysed qualitatively. Patients reported: supportive, individualised care with familiar staff; good communication; that regular scanning was reassuring. Staff believed that team follow-up facilitated immediate decision-making and referral, and reduced visits. They felt that patients value seeing their scans. Patients and staff described positive and negative experiences of multidisciplinary follow-up. There is need to investigate the impact of different approaches to ongoing care.

Quality of Life after Bladder Cancer: A Prospective Study Comparing Patient-related Outcomes after Radical Surgery or Radical Radiotherapy for Bladder Cancer

(2016) Quality of life after bladder cancer: a prospective study comparing patient-related Outcomes after radical surgery or radical radiotherapy for bladder cancer. This document is made available in accordance with publisher policies and may differ from the published version or from the version of record. If you wish to cite this item you are advised to consult the publishers version. Please see the URL above for details on accessing the published version. Copyright and all moral rights to the version of the paper presented here belong to the individual author(s) and/or other copyright owners. To the extent reasonable and practicable, the material made available in SRO has been checked for eligibility before being made available. Copies of full text items generally can be reproduced, displayed or performed and given to third parties in any format or medium for personal research or study, educational, or not-for-profit purposes without prior permission or charge, provided that the authors, title and full bibliographic details are credited, a hyperlink and/or URL is given for the original metadata page and the content is not changed in any way.

Quality of life and communication in orthognathic treatment

Objective The primary aim was to determine what, if any, relationships exist between communication and quality of life in patients receiving orthognathic treatment since this has not been explored. A secondary aim was to compare the Quality of Life (QoL) of a pre-treatment sample with those at 2 years post-surgery. Design A cross-sectional questionnaire method was used. Setting Outpatient clinics providing orthognathic treatment at four UK hospital sites. Participants Two separate samples of pre-treatment (n = 73) and 2-year post-surgery (n = 78) patients participated in the study. Methods At clinic appointments, all eligible patients were invited to complete the Orthognathic Quality of Life Questionnaire (OQLQ), a previously validated condition-specific quality of life measure. At the same time, participants at the 2-year post-surgery stage also completed a second short questionnaire, the Communication Assessment Tool-Team (CAT-T), where they rated the quality of communication they had received during treatment. Results One hundred and fifty-one complete responses were received. The average age was 24.5 years (S.D. 9.77) and the majority (67%) were female in both groups. Statistically significant associations were found between QoL and quality of communication in the treated sample. Findings also showed a comparatively poorer QoL for the pre-treatment participants. This reduced QoL was more pronounced in females than males for all aspects except dentofacial appearance. Conclusions There was an improvement in QoL for patients at 2 years post-surgery compared to pre-treatment. There is an association between QoL and quality of communication as reported by participants at 2 years post-surgery. These novel findings are similar to outcomes in other patient settings such as oncology, but further investigation is required to establish the direction of cause and effect.