Assessing the quality of care for dying patients from the bereaved relatives' perspective: further validation of "Evaluating care and health outcomes--for the dying".

CONTEXT: Evaluating Care and Health Outcomes-for the Dying (ECHO-D) is a post-bereavement questionnaire that assesses quality of care for the dying and is linked with the Liverpool Care Pathway for the Dying Patient (LCP). OBJECTIVES: To further assess the validity and reliability of the ECHO-D, namely the construct validity, internal consistency, and test-retest reliability of key composite scales. METHODS: Self-completion questionnaires were mailed to 778 next-of-kin of consecutive deceased patients who had died an "expected" cancer death in a hospice or acute tertiary hospital. For those willing to complete ECHO-D for a second time, another copy was sent a month later. Maximum likelihood factor analysis and Cronbach's alpha test were conducted for four key composite scales. Test-retest reliability was assessed using percentage agreement, Kappa statistic, and Spearman's correlation coefficient (ordinal data). Comparisons between hospice and hospital groups were conducted using one-way between-groups analysis of variance. RESULTS: Following exclusions (n = 52), 255 of 726 next-of-kin agreed to participate (35.2% response rate). Maximum likelihood factor analysis showed a single factor for three of the scales, and all had good internal consistency (Cronbach's alpha >0.78). Barring two questions, all showed good or moderate stability over time. Overall, hospice participants reported the best quality of care, and hospital participants, where care was not supported by the LCP, reported the worst quality of care. CONCLUSION: These findings support ECHO-D as a valid and reliable instrument to assess quality of care for the dying and assess the effectiveness of interventions such as the LCP.

Assessing quality of care for the dying: the development and initial validation of a postal self-completion questionnaire for bereaved relatives.

BACKGROUND: Evaluating 'quality of care for the dying' from the patients' perspective has practical and ethical difficulties: an alternative is to use bereaved relatives' views as 'proxy' measures. Currently, within the United Kingdom, there is no validated instrument which specifically examines quality of care in the last days of life or the impact of the Liverpool Care Pathway (LCP) for the Dying Patient. AIM: To develop and validate a questionnaire for use with bereaved relatives assessing the quality of care for patients and families in the last days of life and the immediate period after the bereavement. DESIGN: The instrument, 'Evaluating Care and Health Outcomes - for the Dying' (ECHO-D), was developed in four distinct phases: 1. Question formulation, 2. Expert panel review (n = 6), 3. Wider audience review (n = 25), 4. Pilot, including cognitive pre-testing interviews and preliminary test-retest reliability assessment with bereaved relatives (n = 80) SETTING: The study was conducted within a hospice and an acute hospital involving healthcare professionals, lay members and bereaved relatives. RESULTS: The systematic and robust process of questionnaire development generated evidence for ECHO-D's face and content validity. Response rate for the pilot stage with bereaved relatives, however, was comparatively low (23.4%). Test-retest analysis from the pilot showed moderate or good stability for 13 out of 17 key questions, although small sample numbers limited the interpretation. CONCLUSIONS: ECHO-D is the first instrument specifically to assess 'quality of care for the dying', focussing on the last days of life, and has direct links with the use of the LCP Programme.

Does the timing of comorbidity affect colorectal cancer survival? A population based study.

OBJECTIVES: Comorbid conditions in colorectal cancer patients can influence both clinical eligibility for treatment and survival. We aimed to evaluate the effect of comorbidity on 1 year survival from colorectal cancer, and to assess whether this effect varied with the timing of the comorbidity in relation to the cancer diagnosis. STUDY DESIGN AND SETTING: A population based cohort of 29,563 colorectal cancer patients diagnosed between 1997 and 2004 in the North West of England was evaluated. The excess hazard of death up to 1 year after diagnosis was estimated using deprivation and region specific life tables to adjust for background mortality. Results were adjusted for age and stage at diagnosis. RESULTS: Comorbid conditions diagnosed during the period 18 to 6 months before the diagnosis of colorectal cancer were strongly associated with lower survival at 1 year. Stage and age remained the strongest predictors of cancer related mortality even after adjustment for comorbidity. CONCLUSIONS: Administrative data provide a good estimate of the prevalence of most comorbid conditions but may be biased for some comorbid conditions that can be contra-indicators for cancer treatment. The time window in which a comorbid condition occurs in relation to the cancer diagnosis should be taken into account. Adjustment should be carried out, where possible, to provide more robust and clinically appropriate comparisons of population based cancer patient survival.

Problem-based learning at the receiving end: a 'mixed methods' study of junior medical students' perspectives.

UNLABELLED: Qualitative insights about students' personal experience of inconsistencies in implementation of problem-based learning (PBL) might help refocus expert discourse about good practice. AIM: This study explored how junior medical students conceptualize: PBL; good tutoring; and less effective sessions. METHODS: Participants comprised junior medical students in Liverpool 5-year problem-based, community-orientated curriculum. Data collection and analysis were mostly cross-sectional, using inductive analysis of qualitative data from four brief questionnaires and a 'mixed' qualitative/quantitative approach to data handling. The 1999 cohort (end-Year 1) explored PBL, generated 'good tutor' themes, and identified PBL (dis)advantages (end-Year 1 then mid-Year 3). The 2001 cohort (start-Year 1) described critical incidents, and subsequently (end-Year 1) factors in less effective sessions. These factors were coded using coding-frames generated from the answers about critical incidents and 'good tutoring'. RESULTS: Overall, 61.2% (137), 77.9% (159), 71.0% (201), and 71.0% (198) responded to the four surveys, respectively. Responders perceived PBL as essentially process-orientated, focused on small-groupwork/dynamics and testing understanding through discussion. They described 'good tutors' as knowing when and how to intervene without dominating (51.1%). In longitudinal data (end-Year 1 to mid-Year 3), the main perceived disadvantage remained lack of 'syllabus' (and related uncertainty). For less effective sessions (end-Year 1), tutor transgressions reflected unfulfilled expectations of good tutors, mostly intervening poorly (42.6% of responders). Student transgressions reflected the critical incident themes, mostly students' own lack of work/preparation (54.8%) and other students participating poorly (33.7%) or dominating/being self-centred (31.6%). CONCLUSION: Compelling individual accounts of uncomfortable PBL experiences should inform improvements in implementation.

Junior medical students' notions of a 'good doctor' and related expectations: a mixed methods study.

OBJECTIVE: To explore junior medical students' notions of a 'good doctor', given their ideas about: success in Year 1, house jobs, and their attraction to medicine. METHODS: Study participants were junior medical students (1999 and 2001 entry cohorts studied thrice and twice, respectively) and prospective students of the University of Liverpool's 5-year, problem-based, community-orientated curriculum. Data collection and analysis used a 'mixed methods' approach, cross-sectional design, and brief questionnaire surveys. In an index survey, open questions (analysed inductively) explored house jobs and Year 1 success. They also generated 'good doctor' themes, which a second survey confirmed and 3 surveys ranked. A sixth survey explored motivation for choosing medicine (open question). Good doctor rankings were analysed by postcode for prospective medical students classified as school-leaver residents of England and Wales. RESULTS: Response rates were: 91.4% (973) of the 2001-02 admission candidates, on interview days; 68.0% (155), 61.2% (137) and 77.9% (159) of the 1999 cohort (at entry, end-Year 1 and mid-Year 3, respectively), and 71.0% (201) and 71.0% (198) of the 2001 cohort (at entry and end-Year 1, respectively). From 9 themes generally compatible with self-reported motivations and expectations, junior and prospective medical students consistently valued a good doctor as a 'compassionate, patient-centred carer' and a 'listening, informative communicator' over an 'exemplary, responsible professional'. Prospective students from less affluent English and Welsh postcodes valued 'efficient, organised self-manager' very slightly more highly (r(s) = - 0.140, P = 0.003). CONCLUSIONS: This research provided empirical evidence to support ongoing commentary about patients mostly seeking qualities related to communication, caring, and competence in doctors. Weak evidence that socio-economic status might affect notions of a good doctor is worth pursuing.

Breast carcinoma survival in Europe and the United States.

BACKGROUND: Breast carcinoma survival rates were found to be higher in the U.S. than in Europe. METHODS: Multiple regression analysis of breast carcinoma survival rates among women diagnosed between 1990 and 1992 was performed using clinical data from population-based case series from the Surveillance, Epidemiogy, and End Results (SEER) program (13,172 women) and the European Concerted Action on survival and Care of Cancer Patients (EUROCARE) project (4478 women). RESULTS: Early-stage tumors (T1N0M0) were more frequent in the SEER data (41% of cases) than in the EUROCARE data (29%). In the SEER data, early tumors were more frequent in women age > or = 65 years (43%) than in younger women (38%), whereas the reverse was true in the European data (25% vs. 31%). In both case series, > 90% of women underwent surgery and 81-82% underwent lymphadenectomy, but the number of axillary lymph nodes evaluated was higher in the SEER data than in the EUROCARE data. The 5-year survival rate was higher in the U.S. case series (89%) than in the European series (79%). This differential was observed for each stage category evaluated: early (T1N0M0), large lymph node-negative (T2-3N0M0), lymph node-positive (T1-3N+M0), locally advanced (T4M0), and metastatic (M1) tumors. The overall relative excess risk (RER) of death was significantly higher (RER, 1.37; 95% confidence interval [95% CI], 1.25-1.50) among European women compared with U.S. women (referent group). Adjustment for stage, age, surgery, and the number of lymph nodes evaluated explained most of the excess risk (RER, 1.07; 95% CI, 0.98-1.17). CONCLUSIONS: Transatlantic differences in the 5-year survival rates for women diagnosed with breast carcinoma between 1990 and 1992 were attributable mainly to differences in stage of disease. Resources should be invested to achieve earlier diagnosis of breast carcinoma in Europe, especially for elderly women.