Download EVALUATION OF NATIONAL CANCER CONTROL PROGRAMME

EVALUATION OF NATIONAL CANCER CONTROL PROGRAMME
Principal Investigator
:
Dr. V.K.Tiwari, Professor
Dept. of Planning & Evaluation
Co-Investigators
:
Dr. K.S.Nair, Asst. Professor,
Dept. of Planning & Evaluation
:
Dr. L.Lam.Khan Piang, Asst. Professor,
Dept. of Planning & Evaluation
:
Mr. Sherin Raj T.P., ARO,
Dept. of Planning & Evaluation
Team Members
Mr. Bacchu Singh, ARO
Dept. of Planning & Evaluation
:
Dr. Harneet Kaur, Research Consultant
Dept. of Planning & Evaluation
Date of Initiation
:
1st March 2011
Date for Completion
:
December, 2011
General Objectives: The broad objective of the study was to evaluate the implementation status
of the various schemes under National Cancer Control Programme with respect to administrative
structure, manpower development, equipment, fund flow mechanism and utilization of funds and
suggest for strengthening of NCCP and convergence with NRHM and others Non-Communicable
Disease programmes.
Specific Objectives:
1. To assess the various interventions undertaken in the programme for community
awareness, primary prevention and early detection.
2. To assess the availability of cancer treatment facilities in government, private, and NGOs
sector hospitals, and to also assess the referral linkages for cancer cases in the existing
health system.
3. To assess the availability of human resources and training facilities related to cancer care
4. To evaluate the expenditure incurred by the government and patients in private and
government health institutions for treatment of cancer care.
5. To assess and review the availability of Palliative care services, survival studies, media
coverage of cancer care, national cancer Registry Programme and other allied researches
in the field of cancer.
6. To analyze the administrative mechanism for implementation of NCCP at the Centre and
states level and to suggest steps for its strengthening.
7. To identify the bottlenecks in implementation of the programme and in availing and
utilizing the grant-in-aid under various schemes in NCCP.
8. To recommend viable, sustainable, cost effective and flexible guidelines/strategies for
effective implementation of the various components of the programme and its integration
with NRHM and other Non-Communicable Diseases Control Programmes
METHODOLOGY
Sampling Design and Study Population
Keeping in view the All India character of the study and number of institutions involved in
implementation of revised strategy of NCCP, a multistage random sampling design was adopted.
At first stage, the country was divided into Six major regions i.e. East, West, North, South, Central,
and Northeast region
In the second stage, from each region one State was selected based on existence of RCC, Oncology
Wing, DCCP, and Decentralized NGO scheme.
At the third stage, from each selected State two district/locations were selected, one district where
cancer control activities or DCCP was implemented and one district where the RCC was situated.
Cancer Registry if available in the selected districts, the same was also be covered.
Sampling for the Household survey
2 districts per state (total 6 States) were selected by multi-stage random sampling (preferably
where DCCP was in existence).
• Sampling of 125 HHs in urban and 125 HHs in rural area per district.
i. In rural areas 5 villages across 5 PHCs and 25 HHs from each village were selected
randomly.
ii. In urban area, 5 wards and 25 HHs from each ward were selected randomly.
 Thus, a sample of 250 from each district, 500 per State and altogether 3000 individual
(actual 3007) above 15 years from six Selected States were interviewed.
 One FGD for male and one for female in each Rural and Urban areas of each district were
conducted i.e., 4 FGDs per district (2 for women and 2 for Men at village/ward level), 8
FGDs per state and 48 FGDs from 6 States were conducted.
Selection of Cancer Patients
All over the country there were 27 RCCs, and 186 Radio Therapy Centres. In order to study the
perception of the patients regarding the quality of cancer were available through various facilities,
100 cancer patients (OPD and IPD) currently availing services from medical institutions (RCC or
Oncology wing of Medical College) from each state. A total number of 600 cancer patients (actual
611) from different institutions in the country were interviewed.
The medical officers’ in-charge of the NCCP in the state were also be interviewed. Besides, one
FGD with cancer patients from the areas covered by NGOs were conducted. Thus a total of 6
FGDs were conducted.
Secondary data were also collected from Cancer Registry Centres, RCCs of the selected states
during field work and through correspondence with RCCs, library, and research institutions of the
states other than the selected one.
In addition, the data were also be collected from all heads/in-charges of the institutions and at least
one-cancer specialists working in the selected institutions.
Tools & Techniques for Data Collection
Interviews Nine types of interview schedules was developed for data collection from different
levels of stakeholders. These schedules were used to collect relevant information on the
implementation of the programme.
Record Study: Secondary data were collected from website, by writing to the different
organisation/institution, NGOs, Medical Colleges, annual reports, Library of reputed institutions,
and WHO publications. Retrospective data on inputs received under National Cancer Control
Programme and other sources also were collected since April 2001 from Regional Cancer Centres,
Cobalt Therapy Units, Oncology Wings, Cancer Registry, and NGOs. Besides, patients’ data from
Medical Record Department as well as research on cancer conducted by any institution would also
be collected for analysis.
Observation: A checklist was also used for making observation regarding availability of physical
facilities, quality of services and attitude of health staff towards cancer patients availing services
from Regional Cancer Centres/Medical College Hospitals/Charitable Institutions etc.
Status: Report submitted to WHO in November 2012.
Summary of the Result
RCCs/ Oncology Wing Scheme
The RCCs/Hospitals with Oncology Wing was facing challenges such as lack of human resources
specialised in cancers treatment and care, infrastructure for accommodation of patients’ attendants,
lack of advance equipment and machines for cancers diagnostics and treatment, regular funding
for various cancer control activities and maintenance of equipment and machines.
District Cancer Control Programme (DCCP)
In various States the District Cancer Control Programme (DCCP) scheme has been functioning
until the funding was discontinued by the Govt. of India in 2009. Interview with the in-charge of
the DCCP Scheme at the RCCs found that the inflexibility of financial guideline or the norm of
expenditure was one of the problems identified in the utilization of funds received for DCCP.
There was lack of trained human resources to spare for the field activities from the RCCs, besides
the doctors are reluctant as the honorarium amount were not revised since 2005. The Scheme lacks
coordination with the primary health care system, as a result activities at the community level
could hardly have impact as reveal in the findings
Community Awareness & Knowledge about Cancer
The knowledge of risk factor was somewhat high with tobacco and drinking alcohol compared to
others. But the awareness of the risk factors related to cervical and breast cancers are rather low
even though the incidence rate was high. The level of knowledge about warning sign and
symptoms of cancers was very low and vary from states to states. Nearly one-fourth of the
community members have known un-usual bleeding as a symptom of cancer, followed by Lump
or thickening on the lip (22.2%). Even among the urban population, the manifestations of cancer
were not properly known and this was further implied by the fact that most cancers were detected
in the later stages.
It was found that the major source of information related to cancers was T.V. (38%) followed by
Friend and Relatives (36%). Thus, instead of the DCCP activities friend and relatives have been
the source of information for cancer related information. It was supported by the data that about
15 % are aware that cancer awareness camps are organised whereas about 63 % are not aware at
all. It was also evident that only 10 % of the respondents are aware that cancer detection camps
are organised under DCCP whereas about 70 % are even not aware about it. Thus, the awareness
of sign and symptoms of cancers with a provision of screening and early detection facilities
accessible to the community would reduce mortality related to cancers in the country.
Palliative Care
Palliative care unit in the Tata Memorial Hospital, Mumbai and Regional Cancer Centre,
Thiruvananthapuram were good and worth emulating for other RCCs. Both the hospitals have also
initiated a home based care by involving NGOs to give care beyond cure. The NCCP guidelines,
2005 has no provision for financial assistance to RCC for the establishment of Palliative Care Unit.
Even though palliative care was one of the objectives of NCCP, no specific guideline was given
to the RCC for the establishment of the unit. Since palliative care is not adequately covers in the
curriculum of the MBBS and Nursing, separate training is required for the staff in the unit. It is
difficult to get trained human resources for the unit. Some RCCs faced difficulty in obtaining
Morphine as it requires complex procedure of clearance. The MOHFW, GOI may directly supply
morphine to RCC’s according to their requirements The involvement of NGOs relieved the burden
of the hospital staff in the continuum care, but in some RCCs, there was a lack of NGO
involvement.
Cancer Registry/NCRP
NCRP and NCCP are vertically functioning at district, state and national levels even though it is
one of the objectives of NCRP to help in designing, planning, monitoring and evaluation of cancer
control activities under the National Cancer Control Programme (NCCP). In some states it was
reported that private hospitals reluctant to cooperate with the cancer registry, as cancers are not
made notifiable disease. Collecting data on staging as well as clinical extent of cancers was
difficult for the cancer registry and it was not done in the population based cancer registry.
Patients’ Perception on Treatment, Expenditure, Facilities, & Services
The pattern of cancers reported by the patients who were interviewed at the RCCs clearly shows
that most common cancers are curable if treatment is started at the early stage. The three major
types of cancers were mouth cancer (14.1%), breast cancer (11.9%), and cervical cancer (11.8%).
Similar pattern was also observed in most of the cancer registries. These types of cancer can be
successfully controlled by strengthening the community level cancer control activities viz.
organizing cancer awareness campaigns, screening and early detection camps, and more
importantly providing immediate treatment to detected cases.
About 45 percent of the patients reported private health facilities as the first point of contact for
cancers related disease in their local area as against 32 percent who reported public health facilities.
But for cancer investigations, about 47 percent contacted private health facilities, 21 percent at
District/Sub-District Hospitals, and about 4 percent contacted at CHCs/PHCs. The study clearly
shows that there was a lack of involvement of the primary health system in the cancer control
activities. Majority of the cancer patients (76%) faced financial problems in treatment. The BPL
families usually delay their treatment decision due to financial problem. The treatment of cancer
has become a major reason for indebtedness for cancer patients belong to poor families. The poor
become poorer due to the expensive cost of diagnosis and treatment.
Though the RCCs provide free/subsidised treatment to the poor, the study reveals that only a low
proportion of patients were given free/subsidised diagnostic services on costly procedures like
MRI (15%). But, a higher proportion of patients were given free/subsidised charges for less costly
services like X-ray (28%). Due to insufficient grants from the Government of India and the state
governments, the RCCs levy charges to the patients from all categories for investigation and
treatment. In order to lessen the burden by the poor due to the disease, it would be desirable if
higher proportion of poor is provided with free/subsidised charge for the high cost diagnostic test
by RCCs.
Policy Implications of the study may be used to strengthen NCCP in XII Five Year Plan.