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Faciliteren Inventariseren Adviseren Indicators for the evaluation of the impact of the Cancer Plan 2008-2010 REVIEWING INDICATORS FOR EVALUATION OF THE BELGIAN CANCER PLAN 2008-2010 Prof. dr. Elke Van Hoof Eline Remue, PhD Ir. Liesbeth Lenaerts, PhD Ellen De Wandeler Benoit Mores Jelle Goolaerts Depotnummer: 1 Copyright statement Dit werk is gelicenseerd onder een Creative Commons Naamsvermelding-Niet Commercieel-Geen Afgeleide Werken 2.0 België. Dit houdt in dat het werk verspreid/gekopieerd/doorgegeven mag worden, indien de naam van de auteurs wordt vermeld (1), het werk niet voor commerciële doeleinden gebruikt wordt (2) en het werk niet bewerkt wordt (3). Bezoek http://creativecommons.org/licenses/by-nc-nd/2.0/be/ om een kopie te zien van de licentie. Authors: Prof. dr. Elke Van Hoof and ir. Liesbeth Lenaerts, PhD Please cite this document as follows: VAN HOOF, E. and LENAERTS, L. 2011. Indicators for the evaluation of the impact of the cancer plan 2008-2010: reviewing indicators for evaluation of the belgian cancer plan 2008-2010, Scientific Institute of Public Health, Belgian Cancer Center , xxp. 2 List of abbreviations ALND CEA CE-CT CRM CT DCIS ECHI ECHIM ETS EUROCARE EUROCHIP FNAC FU GDP HCQI HMP IARC KCE MDT MeSH MRI NCCP OECD PET PM10 TNEH WHO axillary lymph node dissection carcinoembryonic antigen contrast-enhanced computed tomography circumferential resection margin computed tomography ductal carcinoma in situ European Community Health Indicators European Community Health Indicators Monitoring environmental tobacco smoke European cancer registry-based study on survival and care of cancer patients European Cancer Health Indicator Project fine needle aspiration cytology fluorouridine gross domestic product Health Care Quality Indicator Health Monitoring Program International Agency for Research on Cancer Belgian Health Care Knowledge Centre multidisciplinary team Medical Subject Heading magnetic resonance imaging national cancer control plan Organisation for Economic Co-operation and Development positron emission tomography particulate matter = 10µ3 total national expenditure on health World Health Organisation 3 TABEL OF CONTENT List of abbreviations ..................................................................................................................... 3 INTRODUCTION ............................................................................................................................ 5 RESULTS ....................................................................................................................................... 7 1. QUALITY INDICATORS FOR THE EVALUATION OF CANCER CARE RESULTING FROM A SYSTEMATIC LITERATURE SEARCH..................................................................................................................... 7 2. CANCER HEALTH CARE QUALITY INDICATORS PROPOSED BY PROFESSIONAL ORGANISATIONS . 11 2.1. Organisation for Economic Co-operation and Development (OECD) ............................................ 11 2.2. European Cancer Registry-based study on survival and care of cancer patients (EUROCARE) ..... 11 2.3. CONCORD: Cancer survival in five continents ................................................................................ 11 2.4. European Cancer Health Indicator Project (EUROCHIP) ................................................................ 13 2.5. European Community Health Indicators Monitoring (ECHIM)....................................................... 15 2.6. World Health Organisation (WHO)................................................................................................. 16 2.7. Belgian Health Care Knowledge Centre (KCE) ................................................................................ 22 CONCLUSION.............................................................................................................................. 27 References ................................................................................................................................. 29 4 INTRODUCTION The evaluation of a Cancer Plan is a critical and central component of the organisation and management of the fight against cancer. First, the evaluation process assesses the progress made in terms of the objectives that have been put forward. Secondly, the identification of strengths and gaps of the current Cancer Plan may contribute to future adjustments and additional recommendations. The evaluation of a Cancer Plan preferably focuses on the following three components: (1) the content of actions and measures included; (2) the way the Cancer Plan and its actions are implemented and (3) the results of the actions in terms of health outcomes.1 This document is one of the reports published in the context of the evaluation of the implementation of the Cancer Plan 2008-2010. The evaluation of the implementation was carried out in 6 consecutive phases: 1. Evaluation of the implementation of the Cancer Plan 2008-2010: identification of a methodology 2. Evaluation of the implementation of the Cancer Plan 2008-2010: literature review 3. Evaluation of the implementation of the Cancer Plan 2008-2010: feasibility analysis of the indicators identified in preparation of the evaluation of the Cancer Plan 2008-2010 4. Evaluation of the implementation of the Cancer Plan 2008-2010: Results 2011 5. Evaluation of the implementation of the Cancer Plan 2008-2010: qualitative evaluation by means of a Limesurvey 6. Evaluation of the implementation of the Cancer Plan 2008-2010: summary The above mentioned reports can be obtained through our website (www.ekanker.be) or via email ([email protected]). The aim of this review was to identify valid indicators to analyse the progression of the Belgian Cancer Plan 2008-2010 as well as the impact of actions specified in the Belgian Cancer Plan, by means of a systematic review of the existing literature. REVIEW METHOD: PubMed was searched to identify published and validated quality indicators (publication period until November 2011) for cancer care using the Medical Subject Heading (MeSH) terms ‘quality indicators’ and ‘health care’ combined with terms for ‘cancer’. Only publications containing English abstracts for which a free full-text was available were included and only general quality indicators related to cancer care were withheld (reviewing indicators on technical aspects of oncology care or physician’s 5 performance fell beyond the scope of this review). The literature search identified 565 titles, of which 103 were in English language containing links to a free full text. We also conducted an extensive Internet search of professional organisations seeking guidelines and other grey literature (i.e. not published in peer-reviewed journals) and added relevant indicators to the list of indicators resulting from the literature search. The selection process was performed independently by 2 researchers. 6 RESULTS 1. QUALITY INDICATORS FOR THE EVALUATION OF CANCER CARE RESULTING FROM A SYSTEMATIC LITERATURE SEARCH We searched PubMed for scientific literature (publication period until November 2011) using the MeSH terms ‘quality indicators’ and ‘health care’ combined with terms for ‘cancer’. Only publications containing English abstracts and a link to a free full text were included. In addition, an extensive Internet search of grey literature was performed and relevant indicators were added to the list of indicators resulting from the scientific literature search. Subsequently, we selected those quality indicators with regard to oncopolicy and those that are useful for the evaluation of general cancer care. Indicators on technical aspects of oncology care or physician’s performance were excluded from the overview. Next, scientific references that were also referred to by professional organisations (see Table 2 to 6) were removed from the indicator list. The resulting overview of quality indicators is shown in Table 1. TABLE 1. OVERVIEW OF CANCER CARE QUALITY INDICATORS RESULTING FROM A SCIENTIFIC AND GREY LITERATURE SEARCH INDICATOR TYPE Process Process INDICATOR Preoperative histological confirmation of diagnosis of breast cancer Appropriate axillary dissection (breast cancer) Patients with sentinel lymph node biopsy (SLNB) (breast cancer) Complete staging data (breast cancer) Safety distance between and resection margin (breast cancer) HER-2/neu assessment Specimen imaging (breast cancer) Hormone receptor assessment (breast cancer) Guideline-concordant endocrine therapy in hormone receptor-positive breast cancer patients Guideline-concordant adjuvant and neoadjuvant chemotherapy Use of appropriate standard regimens in chemotherapy for breast cancer Adjuvant combination chemotherapy with anthracyclines and/or taxanes for breast cancer Percentage of breast cancer patients in clinical trials Radiotherapy after breast conserving surgery Radiotherapy after breast conserving surgery for ductal carcinoma in situ (DCIS) Radiotherapy after mastectomy Indication for breast conserving surgery Proportion of breast cancer patients discussed in the multidisciplinary breast cancer team before surgery Proportion of breast cancer patients discussed in the multidisciplinary breast cancer team after surgery Proportion of breast cancer patients who first visited the outpatient clinic at the 7 REF. 6 14 Process Process latest on day seven after contact Proportion of breast cancer patients who received the pathology diagnosis at the latest on day seven after the first visit to the outpatient clinic Proportion of breast cancer patients who underwent surgery at the latest on day 21 after the patient received the pathology diagnosis (exclusion: patients with previous treatment other than surgery) Proportion of breast cancer patients discharged at the latest on day seven after hospital admission Proportion of successful sentinel node procedures (sentinel nodes were detected during the surgical procedure for breast cancer) Proportion of axillary lymph node dissections (ALND) whereby at least 10 lymph nodes were examined (breast cancer) Proportion of breast cancer patients with only one primary surgical intervention (either breast conserving surgery or mastectomy) Proportion of in situ breast cancers 4 Proportion of in situ breast cancers (50 –69 years) Proportion of invasive breast cancers with tumor size Median tumor size for invasive breast cancers (mm) Mean tumor size for invasive breast cancers (mm) Proportion of invasive breast cancers with negative lymph node Proportion of invasive breast tumors with stage I Proportion of invasive breast tumors with stage II+ Proportion of women aged over 50 who received bilateral mammography 3 7 months before surgery Proportion of breast cancer patients who have diagnosis in cytology and histology before surgery Proportion of breast cancer patients who were discussed by a multidisciplinary team (MDT) Proportion of zero-stage breast cancer patients with 10 or more lymph nodes on pathology report Proportion of stage I and II patients who undergo breast conserving surgery Proportion of breast cancer patients with pathology report of tumor size in the medical record after surgery Proportion of invasive breast cancer after surgery with 10 or more lymph nodes removed on pathology report Proportion of invasive breast cancer patients with oestrogen receptor analysis results in the medical record Proportion of patients with invasive cancer who receive radiation treatment after breast conserving surgery Proportion of breast cancer women aged less than and equal to 50 years (premenopausal) with positive lymph node receiving adjuvant chemotherapy Proportion of breast cancer women aged greater than 50 years (postmenopausal) with positive lymph node receiving adjuvant hormone therapy or chemotherapy 8 Outcome Process Outcome Annual mammography rate for breast cancer patients after treatment Five-year local recurrence rate after surgery for breast cancer Five-year disease-free survival rate following breast cancer Five-year overall survival rate following breast cancer Uptake of screening and incidence of interval breast cancers in populations 2 covered by Breast Check (Ireland) Percentage of women, in the target age-groups, for whom population based cervical cancer screening is available Percentage uptake of screening in areas covered by the Irish Cervical Screening Programme Percentage of patients with cancer whose care is consistent with national, multidisciplinary guidelines, as developed by Health Information & Quality Authority (Ireland) Waiting times from diagnosis to definitive treatment for major cancers Percentage of patients waiting for longer than one month from the time of diagnosis to the start of treatment Percentage of breast cancer patients undergoing therapeutic surgical procedures who do so in a designated breast cancer treatment centre Mortality rates: Direct Age Standardised Mortality rate (5-year, all ages) for all causes of cancer Direct Age Standardised Mortality rates (5-year, all ages) for the top six Causes of cancer mortality Percentage of cancer patients seen by a member of a Specialist Palliative Care Team Percentage of cancer patients dying by place of death (home, hospice, hospital) Percentage of cancer patients participating in clinical trials Incidence of cancer (total and per specific cancer type) Survival (five-years relative survival) and quality of life Mortality Percentage of the population who are smokers by age, sex and social class Percentage of the adult and childhood populations who are overweight or obese by age, sex and social class Percentage of the population who consume more than the recommended alcohol weekly limits by age, sex and social class Incidence of major site-specific cancers, to include at a minimum lung, breast, prostate and colorectal cancer Incidence of invasive and in-situ melanoma Trends in quality of life for cancer patients, determined by ongoing quality of life measurement, at different stages in the care pathway for major cancers Stage of presentation of common cancers: appropriate stage indicators should be defined for lung, breast, colorectal and cervical cancers Survival rates: 5-year Relative Survival Rate for Breast Cancer 9 1-year Relative Survival Rate for Lung Cancer 5-year Relative Survival Rate for Prostate Cancer 5-year Relative Survival Rate for Colorectal Cancer national gross product scientific production breast screening participating rate smoking rate all cancer mortality rate (male population), Five-year relative survival for colorectal cancer life expectancy at birth Attendance breast cancer screening program (%) Recalls rate breast cancer screening program (%) Histological confirmation rate following breast cancer screening (%) Rate (%) Malignant (breast cancer screening) Rate (%) In situ (breast cancer screening) Rate (%) Stage I (breast cancer screening) Rate (%) Stage II+ (breast cancer screening) Positive predictive value of mammography Positive predictive value of histological confirmation (breast cancer screening) Benign to malignant biopsy ratio (breast cancer screening) Structure Process Outcome Process 10 5 13 2. CANCER HEALTH CARE QUALITY INDICATORS PROPOSED BY PROFESSIONAL ORGANISATIONS 2.1. Organisation for Economic Co-operation and Development (OECD) The OECD is an international organisation that promotes policies for the improvement of the economic and social well-being of people around the world by providing a forum for governments to share experiences and to seek solutions to common problems. The OECD sets up international standards on socio-economic related themes based on independent and evidence-based analytical work. With regard to health care, the OECD’s Health Care Quality Indicator (HCQI) Project was established in order to develop a common set of indicators to assess the quality of health care delivered across OECD member countries. The key criteria for selecting indicators were the importance of what is being measured, the scientific soundness (i.e. validity, reliability, and explicit evidence) of the measures, and their feasibility (i.e. data needs and cost of measurement)1. In the particular context of cancer care, a questionnaire on cancer screening and systems of cancer care was developed (in collaboration with the coordinators of the CONCORD and the EUROCARE studies, see below) in order to explore the relation between resources, process quality, governance and survival in patients with breast, cervical, colorectal and lung cancers. This questionnaire was generated using evidence of best practice from literature reviews and experience of best practice in collecting health system characteristics information. All OECD quality indicators for international comparison of cancer care are listed in Table 2. 2.2. European Cancer Registry-based study on survival and care of cancer patients (EUROCARE) EUROCARE (European cancer registry-based study on survival and care of cancer patients), set up in 1998 by the European Community, is a Europe-wide concerted action to comparatively analyse survival data from European population-based cancer registries. This cancer epidemiology research is coordinated by the Istituto Nazionale dei Tumori (Milan, Italy) and the Istituto Superiore di Sanità (Rome, Italy) and has thus far provided numerous comprehensive publications on cancer patient survival in Europe resulting from 4 major projects: EUROCARE-1 (analysis of survival data on patients diagnosed from 1978 to 1984), EUROCARE-2 (from 1978 to 1989), EUROCARE-3 (from 1983 to 1994) and EUROCARE-4 (from 1988 to 2002)3, 15. EUROCARE survival data have been used as indicators of progress in cancer control in the EUROCHIP project (see below). 2.3. CONCORD: Cancer survival in five continents The CONCORD study was established in 1999 by the World health Organisation (WHO), OECD, Cancer Research UK and the US Centers for Disease Control and Prevention as an extension of the EUROCARE study. CONCORD provides a worldwide systemic analysis of differences in populationbased cancer survival. The first study assessed survival data of adults diagnosed with cancer of the breast, colon, rectum or prostate during 1990-1994, by use of standard-quality procedures, standard analytic methods and a single, centralised analysis of individual tumor records obtained from cancer registries in five continents8. The second CONCORD (CONCORD-2) study will launch in January 2012 and will cover 10 cancers in adults, and childhood leukaemia, with data from cancer registries from 50 countries on patients diagnosed during the period 1995-2009. In this way, CONCORD contributes to the WHO Action Plan for non-communicable diseases, by promoting international partnerships to evaluate the effectiveness of cancer control at national, regional and global levels 11 TABLE 2. OECD HEALTH CARE QUALITY INDICATORS WITH REGARD TO CANCER CARE TYPE OF INDICATOR INDICATOR Process Cervical cancer screening rates in women aged 20-69 years Mammography screening rates in women aged 50-69 years Characteristics of cancer screening program (interval, target population, low age, coverage, national rollout, provision free of charge) Referral time (general practitioner to specialist) Waiting time (diagnosis to treatment) (should be below 30 days) Provision of optimal treatment (combination of surgery, radiotherapy and chemotherapy if patient is diagnose early at a localised stage) Clinical use of innovative cancer drugs such as Herceptin (trastuzumab), Avastin (bevacizumab), Aromasin (exemestane), Femara (letrozole), Arimidex (anastrozole), Evista (raloxifene), Erbitux (cetuximab), Eloxatin (oxaliplatin), Camptosar (irinotecan) and Xeloda (capecitabine) Setting up cancer-specific targets Introducing a comprehensive national cancer control plan (NCCP) Making additional funding available to achieve these targets Assigning the lead person or organisation to oversee the implementation Putting quality assurance mechanisms in place for cancer care Coordinating care and developing networks for service delivery Identifying the key milestones and timeframes Monitoring the progress Making someone responsible if targets are not met National guidelines (screening, diagnosis, treatment) Case management (MDT) Accreditation of health professionals Licensing of hospitals Outcome Mortality rates (all, breast, cervical, colon, lung and prostate cancers) Five-year relative survival rates for cervical, breast and colorectal cancer Tobacco consumption among adults Adult population smoking daily (%) Change in smoking rates (%) Females smoking daily (%) Males smoking daily (%) Alcohol consumption among adults Change in alcohol consumption (%) Structure Total national expenditure on health (TNEH) GDP per capita adjusted for purchasing power parity Computer tomography (CT) scanner units per million people and GDP Positron emission tomography (PET) scanners per million people Oncologists per million people Comprehensive treatment centres per million people 12 REF. 12, 13 12, 13 13 13 13 13 13 13 13 13 13 13 13 13 13 13 13 13 13 13 12, 13 12, 13 12 12 12 12 12 12 12 13 13 13 13 13 13 2.4. European Cancer Health Indicator Project (EUROCHIP) The European Cancer Health Indicator Project (EUROCHIP) was launched in 2001 by the European Commission as a contribute to the Health Monitoring Program (HMP) in order to produce a comprehensive list of health indicators for the monitoring of cancer and cancer management in Europe. The first EUROCHIP project, EUROCHIP-1 (2001-2003), delivered a comprehensive list of cancer health indicators for the cancer domains of prevention, screening, and care (reference 10 and Table 3). The development of these indicators was based on criteria such as reliability, comparability, ease of collection and national representativeness. The consecutive projects, EUROCHIP-2 and EUROCHIP-3 extended this work and used the list of indicators to evaluate international variations in cancer survival as reported within the EUROCARE projects. TABLE 3. LIST OF EUROCHIP INDICATORS INDICATOR DOMAIN INDICATOR Prevention Lifestyle Consumption of fruit and vegetables Consumption of alcohol Body mass index distribution in the population Physical activity Tobacco survey: prevalence of tobacco smokers among adults; tobacco smokers among 10-14 years old; ex-smokers Environmental Exposure to environmental tobacco smoke (ETS) and Exposure to sun radiation occupational PM10 (particulate matter=10µ3) emissions risk Indoor exposure to radon Prevalence of occupational exposure to carcinogens Exposure to asbestos: mesothelioma incidence and mortality trends Medicaments Prevalence of use of hormonal replacement treatment drugs Epidemiology Population covered by Cancer Registries and Cancer Cancer incidence rates trends and projections Registration Cancer relative survival rates, trends and projections Cancer prevalence proportions, trends and projections Cancer mortality rates, trends, projections and personyears of life lost due to cancer Stage at diagnosis: percentage of a) cases with early diagnosis and b) cases with a metastatic test Screening Screening Percentage of women that have undergone a examinations mammography (breast cancer) Percentage of women that have undergone a cervical cytology examination (cervical cancer) Percentage of persons that have undergone a colo-rectal cancer screening test 13 REF. 10 National evaluation in HMP of organized mass screening process indicators Treatment and clinical aspects Health system delay Resources Treatment Palliative care Social and macroeconomic variables Social indicators Macro economic indicators Demographic indicators Organized screening coverage Screening recall rate Screening detection rate Screening localized cancers Screening positive predictive value Screening benign/malignant biopsy ratio Screening interval cancers Screening specificity Delay of cancer treatment (pilot studies) Percentage of radiation systems in the population Percentage of diagnostic Computed Axial Tomography in the population Percentage of PETs on population (for future) Percentage of magnetic resonances on population (for future) Compliance with best oncology practice Use of morphine in cancer patients Percentage of patients receiving palliative radiotherapy Educational level attained Income by decile Gini’s index GDP Total social expenditure TNEH Total public expenditure on health Anti-tobacco regulations Total expenditure for population-based cancer registries Total expenditure on organized cancer screening programmes Public expenditure on cancer drugs Total expenditure on cancer research Estimated cost for a cancer patient Age distribution in 2010, 2020 and 2030 Life-table quantities 14 2.5. European Community Health Indicators Monitoring (ECHIM) The European Community Health Indicators Monitoring (ECHIM) project was launched by the European Commission in 2005 in order to advance health monitoring in the European Union by developing relevant, valid and comparable health indicators and the subsequent implementation of these indicators in the European Union Member states. This should ultimately allow the comparison of health data at an international level. The development of the ECHIM list of health indicators was based on the European Community Health Indicators (ECHI) shortlist. The indicators presented in the ECHIM report9 and which are relevant for cancer health care, are listed in Table 4. TABLE 4. INDICATORS FROM THE ECHI SHORTLIST RELEVANT FOR CANCER HEALTH CARE INDICATOR DOMAIN INDICATOR REF. Demographic and Population by education 9 socio-economic Population below poverty line and income inequality factors Health status Smoking-related deaths Cancer incidence Determinants of Body mass index health Regular smokers Pregnant women smoking Total alcohol consumption Hazardous alcohol consumption Consumption/availability of fruit Consumption/availability of vegetables Physical activity PM10 exposure Health Breast cancer screening interventions: Cervical cancer screening health services Colon cancer screening Medical technologies: magnetic resonance imaging (MRI) units and CT scans Expenditures on health Survival rates cancer Equity of access to health care services Cancer treatment quality Health Policies on ETS exposure interventions: Policies on healthy nutrition health promotion Policies and practices on healthy lifestyles 15 2.6. World Health Organisation (WHO) The WHO is the directing and coordinating authority for health within the United Nations. This agency monitors and addresses health trends, provides leadership on global health matters by setting norms and standards, and provides technical support to countries around the world. Findings of the International Agency for Research on Cancer (IARC), which is part of the WHO and which coordinates and conducts both epidemiological and laboratory research on cancer, are translated effectively into timely policies for cancer control. Since the early 1980’s the WHO has been promoting NCCPs within the prevention and control of non-communicable diseases in order to assist countries in building and reinforcing their capacity for planning and implementing effective programs. The first part of Table 5 summarizes the WHO core health indicators that are also of importance in the specific context of the evaluation of cancer care. The remainder of Table 5 presents examples of indicators that have been put forward by the WHO to assess the performance of NCCPs. TABLE 5. WHO HEALTH CARE QUALITY INDICATORS WITH REGARD TO CANCER CARE TYPE OF INDICATOR INDICATOR WHO Core Health Indicators Structure External resources for health as percentage of total expenditure on health General government expenditure on health as percentage of total expenditure on health General government expenditure on health as percentage of total government expenditure Out-of-pocket expenditure as percentage of private expenditure on health Per capita government expenditure on health at average exchange rate Per capita government expenditure on health Per capita total expenditure on health Per capita total expenditure on health at average exchange rate Private expenditure on health as percentage of total expenditure on health Private prepaid plans as percentage of private expenditure on health Social security expenditure on health as percentage of general government expenditure on health Total expenditure on health as percentage of GDP Outcome Age-standardized mortality rate for cancer (per 100 000 population) Age-standardized mortality rate for non-communicable diseases (per 100 000 population) Years of life lost to non-communicable diseases (%) Per capita recorded alcohol consumption (litres of pure alcohol) among adults (≥15 years) Prevalence of current tobacco use among adolescents (13-15 years) (%) both sexes Prevalence of current tobacco use among adolescents (13-15 years) (%) female Prevalence of current tobacco use among adolescents (13-15 years) (%) male 16 REF. 17 Examples of quality dimensions that can be used to evaluate the performance of a national cancer control program Process Level of satisfaction of providers and patients with tobacco cessation 18 counselling in the workplace Level of satisfaction of providers and patients with cervical cancer screening program Level of satisfaction of providers and patients with the treatment for curable cancers Level of satisfaction of providers and patients with palliative care program Percentage of providers and patients who are smokers that have access to tobacco cessation counselling Percentage of at risk women with a Pap smear taken in the last 5 years Timeliness of diagnosis and treatment for patients referred for having an abnormal cytology (cervical cancer screening) Percentage of patients with curable cancers that receive adequate treatment Timeliness of diagnosis and treatment of curable cancer cases referred for having warning signs Level of morphine and other opioids consumption during palliative care Percentage of cancer patients with advanced cancer who have access to palliative care services Percentage of patients with a non-communicable disease that are assessed about their tobacco smoking status Quality of Pap smears taken by primary health care workers and gynaecologists Percentage of patients with pre-cancerous cervical lesions that are treated with non-invasive procedures Percentage of patients that are treated for curable cancers according to guidelines Percentage of patients who receive palliative care according to guidelines Percentage of primary health care workers with the necessary skills to give counselling on smoking cessation Continuing training of primary health care workers and laboratory staff regarding Pap smears collection, processing and analysis Quality assurance activities for diagnosis and treatment of the most common cancers Percentage of primary healthcare workers with the skills to provide basic palliative care Plans implemented for avoiding relapse in ex-tobacco smokers Plans for follow-up of target population to repeat cervical cancer screening every 5 years Follow-up mechanisms for patients treated for non-invasive cervical cancer Mechanisms for long-term follow-up of patients treated for curable cancers Percentage of patients that have access to trained health care worker in palliative care in their community 17 Outcome Tobacco cessation rates among smokers with low to severe addiction Changes in stage distribution of cervical cancer Incidence of invasive cancer Mortality from invasive cancer Overall and stage-specific survival rates from curable cancers Improved control of symptoms in patients with advanced cancer Improved quality of life in palliative care Structure Costs of counselling for smoking cessation Percentage of Pap smears taken from at risk women Comparative data on cost of treatment of curable cancers Reduction in hospital stays for treatment of curable cancers Reduction of invasive procedures for palliative care Reduction in hospital stays for palliative care Regulations to avoid passive smoking in healthcare settings Regulations to protect laboratory staff Radiation protection for patients and providers in radiotherapy services Measures to avoid abuse of opioids Examples of structure, process and outcome indicators, and their associated standards, for evaluation of a cervical cytology screening program Structure Organised cervical cancer screening program included in the national cancer 19 control policy Early detection, diagnosis and treatment services for cervical cancers screening included in the health insurance package Network of health-care providers across the different levels of care Network of community leaders trained and motivated to provide good quality services Process Number of women in the target group (35-64 years of age) Proportion of women in the target group that have been screened in last 3 years (coverage) Proportion of screening tests done in the target population as specified under the program Proportion of screening tests that needed to be repeated because they were inadequate Proportion of primary health-care providers monitored for adequate administration of the test Proportion of test-positive women in the screened group Proportion of test-positive women who receive their screening test result within 3 weeks Proportion of test-positive women who are referred and reach a specialized clinic for diagnosis Proportion of test-positive women who receive confirmation of diagnosis within 1 month Proportion of test-positive women diagnosed with precancerous lesions or cancer 18 Short-term outcomes Proportion of women diagnosed with precancerous lesions or cancer who receive appropriate treatment within 2 months of diagnosis Ratio between the number of early cancer cases (cancer in situ, stage I) detected by screening and the number of cancers diagnosed during the screening intervals (false negatives missed during screening and fast growing s that developed during the screening intervals) Proportion of cased diagnosed in early stages Overall 5-year survival rate for cervical cancer Mediumterm outcomes (5 years) Long-term Invasive cervical cancer incidence rates outcomes Invasive cervical cancer mortality rates (10 years) Examples of structure, process and outcome indicators, and their associated standards, for evaluation of a diagnosis and treatment program for common curable cancers Structure Policies and regulations include diagnosis and treatment as a key component 20 of the national cancer control plan Funding and service delivery models established to support the provision of cancer diagnosis and treatment for all patients with curable cancers List of essential medicines for the complete treatment of curable cancers requiring chemotherapy agents and other medicines network of health workers across the different levels of care trained to refer patients without delay or to provide good diagnostic and treatment services hospital registries for monitoring and follow-up of all cancer patients targeted by the program, linked to the early detection information system as needed educational courses that provide core knowledge and skills to practising health-care professionals across all levels of care regarding referral of cancer cases and provision of palliative care; expert knowledge and skills to selected health-care professionals on providing diagnosis and treatment services at the secondary and tertiary levels, as needed undergraduate oncology education to health-care professionals (doctors, nurses, pharmacists, social workers) focusing on awareness of early signs and symptoms of common detectable cancers education to patients and family caregivers Process Number of cases detected early where patients get timely confirmation of diagnosis Number of curable cancer patients getting timely treatment Number and type of trained health-care professionals at the secondary and tertiary levels of care qualified to provide diagnosis and treatment for curable cancers according to established standards Proportion of patients whose cancers are detected early who get timely 19 diagnosis Proportion of patients with diagnosed curable cancers who get timely treatment Proportion of curable cancer patients who get adequate treatment according to established guidelines Proportion of curable cancer patients who abandon or do not complete treatment, by age, sex and socioeconomic group Proportion of curable cancer patients and their family caregivers who get psychosocial support throughout the course of the disease Proportion of patients and family caregivers receiving relevant education Short-term Proportion of curable cancer cases diagnosed in early stages outcomes MediumOverall 5-year survival rates for curable cancers term and long-term Overall 10-year survival rates for curable cancers outcomes (5 and 10 Mortality rates for curable cancers years) Examples of structure, process and outcome indicators, and their associated standards, for use in evaluating the fully established activities of a cancer palliative care programme Structure Policies and regulations include palliative care as a key component of national 21 cancer control Funding and service delivery models established to support the provision of cancer palliative care in all settings where patients receive care Opioid prescribing laws and regulations for pain relief List of essential medications for palliative care Network of health-caregivers across the different levels of care Network of community leaders and caregivers trained and motivated to provide good quality palliative care services, including home-based care Communities that own and support palliative care services Educational courses that provide: Core knowledge and skills to practising health-care professionals across all levels of care Expert knowledge and skills to a few selected health-care professionals to lead palliative care services at the secondary and tertiary levels Undergraduate palliative care education for health-care professionals (physicians, nurses, pharmacists, social workers) Process Number of advanced cancer patients receiving palliative care according to established standards Number and type of trained health-care professionals at the different levels of care qualified to provide palliative care according to established standards Proportion of advanced cancer patients who get early palliative care according to established standards Proportion of advanced cancer patients who get palliative care according to 20 Outcome established standards Proportion of advanced cancer patients receiving home-based care provided by trained caregivers Proportion of advanced cancer patients receiving home-based care who need to be referred for specialised palliative care services at the secondary and tertiary levels Proportion of family caregivers who get psychosocial support through the course of the disease, and through bereavement care, according to established standards Proportion of advanced cancer patients who get timely relief from pain and other physical, psychosocial and spiritual problems Proportion of caregivers of advanced cancer patients who get timely relief from psychosocial and spiritual problems 21 2.7. Belgian Health Care Knowledge Centre (KCE) The KCE is a Belgian federal institution aimed at advising policy-makers when deciding on health care and health insurance through analysis and scientific studies. In the field of oncology, the KCE produced several reports with regard to the development of recommendations of good clinical practice and the assessment of health technologies. In the context of establishing a Belgian quality system for oncology, the KCE set up three pilot studies to develop and assess indicators for the evaluation of quality of care for colorectal, breast en testicular cancer (Reviewed in reference 16). These quality indicators, selected on their reliability, relevance, interpretability and actionability, are shown in Tabel 6. TABLE 6. KCE QUALITY INDICATORS FOR RECTAL, BREAST AND TESTICULAR CANCER INDICATOR DOMAIN INDICATOR REF. General Rectal cancer Proportion of patients discussed at a MDT meeting 16 Indicators Breast cancer Proportion of breast cancer women discussed at the MDT meeting Proportion of women with breast cancer who participate in clinical trials Testicular Proportion of patients with testicular cancer discussed at cancer the MDT meeting Proportion of patients with relapsing testicular cancer after curative treatment that are included in a clinical trial Rectal cancer Overall 5-year survival by stage Disease-specific 5-year survival by stage Proportion of patients with local recurrence Breast cancer Overall 5-year survival by stage Disease-specific 5-year survival by stage Disease-free 5-year survival by stage 5-year local recurrence after curative surgery, by stage Testicular Overall 5-year survival by stage cancer Disease-specific 5-year survival by stage Disease-free 5-year survival by stage Diagnosis and Rectal cancer Proportion of patients with a documented distance from staging the anal verge Proportion of patients in whom a CT of the liver and RX or CT of the thorax was performed before any treatment Proportion of patients in whom a CEA was performed before any treatment Proportion of patients undergoing elective surgery that had preoperative complete large bowel-imaging Proportion of patients in whom a transrectal ultrasound and pelvic CT and/or pelvic MRI was performed before any treatment Proportion of patients with cStage II-III that have a reported 22 Breast cancer Testicular cancer Neoadjuvant treatment Rectal cancer cCRM Time between first histopathologic diagnosis and first treatment Proportion of women with class 3, 4 or 5 abnormal mammograms having an assessment with a specialist within 2 months of mammography Proportion of women with class 3, 4 or 5 abnormal mammograms who have at least one of the following procedures within 2 months after communication of the screening result: mammography, ultrasound, fine-needle aspiration, or percutaneous biopsy Proportion of newly diagnosed cstage I-III breast cancer women who underwent two-view mammography or breast sonography within 3 months prior to surgery Proportion of women who received axillary ultrasonography with fine needle aspiration cytology of the axillary lymph nodes before any treatment Proportion of women in whom human epidermal growth factor receptor 2 status was assessed before any systemic treatment Proportion of women in whom a ER and PgR status assessment were performed before any systemic treatment Proportion of breast cancer women with cytological and/or histological assessment before surgery Proportion of sentinel lymph nodes biopsy in cN0 patients without contraindications Proportion of patients with testicular cancer undergoing tumor marker assessment before any treatment Proportion of patients with testicular cancer undergoing contrast-enhanced computed tomography (CE-CT) or MRI for primary staging Proportion of cStage II-III patients that received a short course of neoadjuvant pelvic RT Proportion of cStage II-III patients that received a long course of neoadjuvant pelvic RT Proportion of cStage II-III patients that received neoadjuvant chemoradiation with a regimen containing 5FU Proportion of cStage II-III patients treated with neoadjuvant 5-FU based chemoradiation, that received a continuous infusion of 5-FU Proportion of cStage II-III patients treated with a long course of preoperative pelvic RT or chemoradiation, that completed this neoadjuvant treatment within the planned 23 Breast cancer Surgery Rectal cancer Breast cancer (Adjuvant) treatment Testicular cancer Rectal cancer Breast cancer timing Proportion of cStage II-III patients treated with a long course of preoperative pelvic RT or chemoradiation, that was operated 6 to 8 weeks after completion of the (chemo)radiation Rate of acute grade 4 radio(chemo)therapy-related complications Proportion of operable cT2-T3 women who received neoadjuvant systemic therapy Proportion of R0 resections Proportion of abdominoperineal resection and Hartmann’s procedures Proportion of patients with stoma 1 year after sphinctersparing surgery Rate of patients with major leakage of the anastomosis after sphincter-sparing surgery Inpatient or 30-day mortality Rate of intra-operative rectal perforation Proportion of breast cancer women who underwent an axillary lymph node dissection after positive SNLB > 2 mm Proportion of women with high-grade and/or palpable and/or large DCIS of the breast who had negative margins after surgery, whatever the surgical option (local wide excision or mastectomy) Proportion of cStage I and II women who undergo breast conserving surgery/mastectomy Proportion of women with breast cancer recurrence after breast conserving surgery who are treated by a mastectomy Number of annually surgically treated patients with testicular cancer per centre Proportion of p-ypStage III patients with R0 resection that received adjuvant chemotherapy Proportion of pStage II-III patients with R0 resection that received adjuvant radiotherapy or chemoradiotherapy Proportion of p-ypStage II-III patients with R0 resection that started adjuvant chemotherapy within 3 months after surgical resection Proportion of p-ypStage II-III patients with R0 resection treated with adjuvant chemo(radio)therapy, that received 5-FU based chemotherapy Rate of acute grade 4 radio- or chemotherapy-related complications Proportion of women with a breast cancer who are 24 Testicular cancer Palliative care Rectal cancer Follow-up Rectal cancer receiving intravenous chemotherapy for whom the planned chemotherapy regimen (which includes, at a minimum: drug[s] prescribed, dose, and duration) is documented prior to the initiation, and at each administration of the treatment regimen Proportion of women receiving adjuvant systemic therapy after breast surgery for invasive breast cancer Proportion of women with hormone receptor positive invasive breast cancer or DCIS who received adjuvant endocrine treatment (Tamoxifen/AI) Proportion of women with HER-2 positive, node positive or high-risk node negative breast cancer (tumor size > 1 cm), having a left ventricular ejection fraction of .50-55% who received chemotherapy and Trastuzumab Proportion of women treated by Trastuzumab in whom cardiac function is monitored every 3 months Proportion of women who received radiotherapy after breast conserving surgery Proportion of women who underwent a mastectomy and having ≥ 4 positive nodes who received radiotherapy on axilla following ALND Proportion of women with HER-2 positive metastatic breast cancer who received Trastuzumab with/without nonanthracycline based chemotherapy or endocrine therapy as first-line treatment Proportion of metastatic breast cancer women who receive systemic therapy as 1st and/or 2nd line treatment Proportion of women with metastatic breast cancer and lytic bone metastases who received biphosphonates Radiation dose and field in patients with testicular cancer treated with radiotherapy by stage Proportion of patients with stage I non-seminoma treated with active surveillance Proportion of patients receiving CE-CT or MRI for residual disease assessment at the end of systemic treatment Degree and duration of active surveillance in patients with stage I non-seminoma or seminoma Rate of cStage IV patients receiving chemotherapy Rate of acute grade 4 chemotherapy-related complications in stage IV patients Rate of curatively treated patients that received a total colonoscopy within 1 year after resection Rate of patients undergoing regular follow-up Late grade 4 complications of radiotherapy or 25 Breast cancer Histopathologic Rectal cancer examination Breast cancer chemoradiation Proportion of women who benefit from an annual mammography after a history of breast cancer Use of the pathology report sheet Quality of total mesorectal excision assessed according to Quirke and mentioned in the pathology report Distal tumor-free margin mentioned in the pathology report Number of lymph nodes examined (y)pCRM mentioned in mm in the pathology report Tumor regression grade mentioned in the pathology report (after neoadjuvant treatment) Proportion of breast cancer resection pathology reports that include the tumor size (macro-and microscopically invasive and DCIS), the histologic type of the primary tumor, the pT category (primary tumor), the pN category (regional lymph nodes including numbers), the lymphovascular invasion and the histologic grade Proportion of women with invasive breast cancer undergoing ALND and having 10 or more lymph nodes removed 26 CONCLUSION The list of quality indicators was screened to identify potential indicators for the evaluation of the impact of the implementation of a specific action and/or measure of the Cancer Plan 2008-2010. As shown in Table 7, the resulting selection of useful indicators was small and not representative of the content of the actions and measures described in the Cancer Plan 2008-2010. TABLE 7. SELECTION OF QUALITY INDICATORS FROM THE LITERATURE THAT ARE USEFUL FOR THE EVALUATION OF THE CANCER PLAN 2008-2010 Percentage of the population who are smokers by age, sex and social class Tobacco survey: prevalence of tobacco smokers among adults; tobacco smokers among 10-14 years old; ex-smokers Pregnant women smoking Tobacco cessation rates among smokers with low to severe addiction Exposure to environmental tobacco smoke (ETS) Breast screening participating rate Rate (%) In situ (breast cancer screening) Proportion of breast cancer patients who were discussed by a multidisciplinary team (MDT) Invasive cervical cancer incidence rates Five-year overall survival rates for cervical, breast and colorectal cancer Mortality rates Stage at diagnosis: percentage of cases with a metastatic test Waiting times from diagnosis to definitive treatment Proportion of patients discussed at a MDT meeting Percentage of cancer patients participating in clinical trials Provision of optimal treatment (combination of surgery, radiotherapy and chemotherapy if patient is diagnose early at a localised stage) Clinical use of innovative cancer drugs such as Herceptin (trastuzumab), Avastin (bevacizumab), Aromasin (exemestane), Femara (letrozole), Arimidex (anastrozole), Evista (raloxifene), Erbitux (cetuximab), Eloxatin (oxaliplatin), Camptosar (irinotecan) and Xeloda (capecitabine) Setting up cancer-specific targets Introducing a comprehensive national cancer control plan (NCCP) Making additional funding available to achieve these targets Assigning the lead person or organisation to oversee the implementation Putting quality assurance mechanisms in place for cancer care Coordinating care and developing networks for service delivery Identifying the key milestones and timeframes Monitoring the progress Making someone responsible if targets are not met National guidelines (screening, diagnosis, treatment) Case management (MDT) 27 Accreditation of health professionals Licensing of hospitals TNEH Public expenditure on cancer drugs Computer tomography (CT) scanner units per million people and GDP Positron emission tomography (PET) scanners per million people Percentage of radiation systems in the population Medical technologies: magnetic resonance imaging (MRI) units and CT scans Oncologists per million people Use of morphine in cancer patients Percentage of patients receiving palliative radiotherapy Policies and regulations include palliative care as a key component of national cancer control Number and type of trained health-care professionals at the different levels of care qualified to provide palliative care according to established standards Educational level attained Income by decile Gini’s index In order to assess the impact of the implementation of specific actions and measures included in the Cancer Plan 2008-2010, a bottom-up approach was required. 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