National compliance to an evidence-based multidisciplinary guideline on pancreatic and periampullary carcinoma.

BACKGROUND: We evaluated national compliance to selected quality indicators from the Dutch multidisciplinary evidence-based guideline on pancreatic and periampullary carcinoma and identified areas for improvement. METHODS: Compliance to 3 selected quality indicators from the guideline was evaluated before and after implementation of the guideline in 2011: 1) adjuvant chemotherapy after tumor resection for pancreatic carcinoma, 2) discussion of the patient within a multidisciplinary team (MDT) meeting and 3) a maximum 3-week interval between final MDT meeting and start of treatment. RESULTS: In total 5086 patients with pancreatic or periampullary carcinoma were included. In 2010, 2522 patients were included and in 2012, 2564 patients. 1) Use of adjuvant chemotherapy following resection for pancreatic carcinoma increased significantly from 45% (120 out of 268) in 2010 to 54% (182 out of 336) in 2012 which was mainly caused by an increase in patients aged <75 years. 2) In 2012, 64% (896 of 1396) of patients suspected of a pancreatic or periampullary carcinoma was discussed within a MDT meeting which was higher in patients aged <75 years and patients starting treatment with curative intent. 3) In 2012, the recommended 3 weeks between final MDT meeting and start of treatment was met in 39% (141 of 363) of patients which was not influenced by patient and tumor characteristics. CONCLUSION: Compliance to three selected quality indicators in pancreatic cancer care was low in 2012. Areas for improvement were identified. Future compliance will be investigated through structured audit and feedback from the Dutch Pancreatic Cancer Audit.

Swallowing problems at the end of the palliative phase: incidence and severity in 164 unsedated patients.

Swallowing problems are reported to be a common finding in patients who receive palliative care. In existing literature, the incidence of swallowing problems is mostly described in small numbers of patients at the start of the palliative phase. As we hypothesized that the incidence of dysphagia might increase as the palliative phase progresses, this study describes the incidence of swallowing problems and related problems in 164 unsedated patients at the end of the palliative phase, defined by the last 72 h before their death. To determine the incidence of swallowing problems and related problems, questionnaires were completed bereaved by relatives and nursing staff. Our data shows that in the palliative phase the incidence of swallowing problems can be as high as 79 %. A significant correlation was found between swallowing problems and reduced psycho-social quality of life as assessed by nursing staff (ρ = -.284). Overall the nursing staff rated the incidence and severity of swallowing problems (and related problems like frequent coughing, loss of appetite, and problems with oral secretions) lower than the relatives. This study suggests that incidence of swallowing problems at the end of the palliative phase is high and that these difficulties may not only result in discomfort for patients, but also can raise concern for caregivers. More information and education on management of swallowing problems in palliative settings might be needed for both relatives and nursing staff. However, the data also suggest that any intervention should be proportional to the level of distress caused by the intervention.

[Revision of the national guideline 'Melanoma']. / Revisie van de landelijke richtlijn 'Melanoom'.

Melanoma is in the top ten of the most common types of cancer in the Netherlands. Incidence is increasing steadily by about 4% every year. The relative 5-year survival rate for patients with a melanoma with Breslow thickness < 1mm is about 98%. The national guideline 'Melanoma version 2.0' is the result of an evidence based revision focussed on the most important bottlenecks encountered in clinical practice. The most important changes concern indications for sentinel node procedures (in patients with tumours stage 1b and higher) and multidisciplinary consultation (patients with stage 3 and 4 tumours). The guideline is intended for all professionals involved in diagnosis, treatment and support of patients with melanoma of the skin.- Guideline summary cards and the 'Melanoma Pathway' ('Zorgpad Melanoom') are available at www.iknl.nl.- An English translation of the quideline will be available in April 2013 at www.oncoline.nl.

Awareness of dying: it needs words.

PURPOSE: The purpose of this research is to study to what extent dying patients are aware of the imminence of death, whether such awareness is associated with patient characteristics, symptoms and acceptance of dying, and whether medical records and nurses' and family caregivers' views on patients' awareness of dying agree. METHODS: Nurses and family caregivers of 475 deceased patients from three different care settings in the southwest Netherlands were requested to fill out questionnaires. The two groups were asked whether a patient had been aware of the imminence of death. Also, medical records were screened for statements indicating that the patient had been informed of the imminence of death. RESULTS: Nurses completed questionnaires about 472 patients, family caregivers about 280 patients (response 59%). According to the medical records, 51% of patients had been aware of the imminence of death; according to nurses, 58%; according to family caregivers, 62%. Patients who, according to their family caregiver, had been aware of the imminence of death were significantly more often in peace with dying and felt more often that life had been worth living. Inter-rater agreement on patients' awareness of dying was fair (Cohen's kappa = 0.23-0.31). CONCLUSIONS: Being aware of dying is associated with acceptance of dying, which supports the idea that open communication in the dying phase can contribute to the quality of the dying process. However, views on whether or not patients are aware of the imminence of death diverge between different caregivers. This suggests that communication in the dying phase of patients is open for improvement.

An increased utilisation rate and better compliance to guidelines for primary radiotherapy for breast cancer from 1997 till 2008: a population-based study in the Netherlands.

Only scarce data are available on the utilisation rate of primary radiotherapy (RT) for patients with breast cancer. In this study, we compared the use of primary RT for patients with stages I-III breast cancer in 4 of the 9 Dutch Comprehensive Cancer Centres, focussing specifically on time trends as well as age effects. From the population-based cancer registries, we selected all females diagnosed with breast cancer between 1997 and 2008 (N=65,966, about 50% of all Dutch breast cancer patients in this period). We observed an overall increase in the use of primary RT for breast cancer patients ranging from 55-61% in 1997 to 58-68% in 2008. This can be explained by a higher rate of breast-conserving surgery (BCS), which was followed by RT in 87-99% of cases, and a reduced rate of total mastectomy (TM) which was followed by RT in 26-47% of cases. Increasing age was associated with a reduced use of RT, especially for those above 75. Finally, we observed a decrease in time of observed regional variances in the use of RT after BCS as well as after TM (for stage III disease). These findings can be attributed to the development and implementation of the Dutch nationwide guidelines for treatment of breast cancer.

[The quality indicator 'tumour positive surgical margin following breast-conserving surgery' does not provide transparent insight into care]. / De prestatie-indicator 'irradicaliteit na borstsparende operatie': geen zuiver zicht op goede zorg.

OBJECTIVE: To determine whether the quality indicator 'tumour positive surgical margin following breast-conserving surgery, consistently measured the quality of breast-cancer surgery independently of the different definitions used and differences in case mix, taking statistical random variation into account. DESIGN: Descriptive study. METHODS: Data was collected from 762 patients who underwent breast-conserving surgery for invasive or in situ carcinoma of the breast, in the period 1 July 2007 - 30 June 2008 in 1 of the 9 hospitals in the region of the Comprehensive Cancer Centre West in the Netherlands. We compared 3 definitions for 'tumour positive surgical margin': the one used by the Health Care Inspectorate, the one used by the organisation 'Zichtbare Zorg' ('transparent care') and the percentage of re-resection. For case mix correction we identified risk factors for tumour margin positivity with logistic regression. The results were presented in a funnel plot, using 95% confidence interval (CI) around the national standard of 20%. RESULTS: Depending on the definition used, the tumour positive surgical margin rate of the total group varied from 11 to 21%. Individual hospital rates varied by up to 19%. In situ carcinoma was associated with higher tumour positive surgical margin rates. Results differed significantly between hospitals for all 3 definitions. However, the funnel plot showed that results for most hospitals fell within the 95% CI of the standard. Whether a hospital fell within the 95% CI of the standard depended upon on the definition used and case mix correction. CONCLUSION: The lack of a single definition for the quality indicator 'tumour positive surgical margin following breast-conserving surgery' and the lack of case-mix correction undermine the validity of the indicator. Standardisation of definitions, uniform registration and the use of funnel plots can provide a more transparent insight into the quality of care.

[Improved compliance with the 'Melanoma' treatment guideline]. / Betere navolging van de richtlijn 'Melanoom'.

OBJECTIVE: To evaluate the level of compliance with the revised treatment guideline for melanoma (2005) and the extent to which the points of concern from the previous guideline evaluation in 2001 had been implemented. DESIGN: Retrospective observational cohort study. METHOD: The evaluation was performed using data from the pathology reports of patients diagnosed with melanoma of the skin between 1 April and 30 September 2007 at hospitals that fall under the Comprehensive Cancer Centres for the South and West of the Netherlands. RESULTS: In 85% of the patients the melanoma was treated according to the guideline in two sessions: a diagnostic excision followed by a therapeutic re-excision. These figures were 69% for melanoma in situ, and 87% for invasive melanoma. The other patients were treated in one session. In the pathology reports of the patients with an invasive melanoma the rates of pathological documentation were: margin of the diagnostic excision: 64%, Breslow thickness: 97%, presence or absence of ulceration: 77%. In the Comprehensive Cancer Care Centre West Netherlands region, the margin of re-excision was determined: this margin satisfied the guideline in 86% of patients with an invasive melanoma. CONCLUSION: Compared to the previous guideline evaluation in 2001, the excision policy had improved. In the pathology report, the excision margin and the presence or absence of ulceration should be better documented.

End-of-life decision making for cancer patients in different clinical settings and the impact of the LCP.

Differences in the general focus of care among hospitals, nursing homes, and homes may affect the adequacy of end-of-life decision making for the dying. We studied end-of-life decision-making practices for cancer patients who died in each of these settings and assessed the impact of the Liverpool Care Pathway for the Dying Patient (LCP), a template for care in the dying phase. Physicians and relatives of 311 deceased cancer patients completed questionnaires. The LCP was introduced halfway through the study period. During the last three months of life, patients who died in hospital received anticancer therapy and medication to relieve symptoms more often than those in both other settings. During the last three days of life, patients who died in the hospital or nursing home received more medication than those who died at home. The LCP reduced the extent to which physicians used medication that might have hastened death. Relatives of patients who died in the hospital tended to be least positive about the patient's and their own participation in the decision making. We conclude that cancer patients who die in the hospital are more intensively treated during the last phase of life than those who die elsewhere. The LCP has an impact on the use of potentially life-shortening medication during the dying phase. Communication about medical decision making tends to be better in the nursing home and at home.

Does recognition of the dying phase have an effect on the use of medical interventions?

During the dying phase, patients often receive interventions that are not aimed at promoting their comfort. We investigated how recognition of the dying phase affects the use of interventions by comparing patients for whom the dying phase had been recognized with patients for whom it had not been recognized. We included 489 of 613 patients (80%) who died either in a hospital, nursing home, or primary care setting between November 2003 and February 2006. After the death of patients, nurses filled in questionnaires, and patient records were searched for information about therapeutic and diagnostic interventions applied during the dying phase. Caregivers had recognized the dying phase of 380 patients (78%). The number of patients who had received diagnostic interventions during the last three days of life was significantly lower when the dying phase had been recognized (39% vs. 57%) (p = 0.00). Therapeutic interventions were used in similar frequencies in both groups. We conclude that recognition of the dying phase reduces the number of undesirable diagnostic interventions.

Using the LCP: bereaved relatives' assessments of communication and bereavement.

The Liverpool Care Pathway (LCP) is aimed at improving care and communication in the dying phase. The authors studied whether use of the LCP affects relatives' retrospective evaluation of communication and their level of bereavement. An intervention study was conducted. During the baseline period, usual care was provided to dying patients. During the intervention period, the LCP was used for 79% of the patients. In total, bereaved relatives filled in a questionnaire for 57% of the patients, on average 4 months after death. In the intervention period, relatives had lower bereavement levels when compared with relatives in the baseline period (P = .01). Communication was evaluated similarly for both periods. We conclude that LCP use during the dying phase seems to moderately contribute to lower levels of bereavement in relatives.

The effect of the Liverpool Care Pathway for the dying: a multi-centre study.

We studied the effect of the Liverpool Care Pathway (LCP) on the documentation of care, symptom burden and communication in three health care settings. Between November 2003 and February 2005 (baseline period), the care was provided as usual. Between February 2005 and February 2006 (intervention period), the LCP was used for all patients for whom the dying phase had started. After death of the patient, a nurse and a relative filled in a questionnaire. In the baseline period, 219 nurses and 130 relatives filled in a questionnaire for 220 deceased patients. In the intervention period, 253 nurses and 139 relatives filled in a questionnaire for 255 deceased patients. The LCP was used for 197 of them. In the intervention period, the documentation of care was significantly more comprehensive compared with the baseline period, whereas the average total symptom burden was significantly lower in the intervention period. LCP use contributes to the quality of documentation and symptom control.

The last 3 days of life in three different care settings in The Netherlands.

INTRODUCTION: Little is known about the characteristics of dying in different care settings, such as the hospital, the nursing home, or the home-care setting. MATERIALS AND METHODS: We measured the burden of symptoms, medical and nursing interventions, and aspects of communication during the last 3 days of life within each of these settings. We included 239 of 321 patients (74%) who died in one of these settings in the southwest of The Netherlands, between November 2003 and February 2005. After the patient's death, a nurse filled in a questionnaire. RESULTS: Pain and shortness of breath were more severe in hospital patients as compared to nursing home and home-care patients, whereas incontinence was less severe in hospital patients. Several medical interventions, such as a syringe driver, vena punctures or lab tests, radiology or ECG, antibiotics, and drainage of body fluids were more often applied during the last 3 days of life to hospital patients than to nursing home and home-care patients. This also holds for the measurement of body temperature and blood pressure. In the hospital setting, the patient and the family were more often informed about the imminence of death of the patient than elsewhere. The general practitioner and other professional caregivers were less often informed about the imminence of death of hospital patients than of other patients. DISCUSSION: We conclude that pain and shortness of breath were more severe among hospital patients, whereas incontinence was more severe among nursing home and home-care patients. Hospital patients relatively often receive medical interventions and standard controls during the last 3 days of life. In hospital, communication about impending death seems to take place more often shortly before death.