INTRODUCTION:

Whenever the diagnosis of a serious disease is made, efforts are directed by every member of the team not only to save the life of the person but also to offer support to the patient and his family throughout their sicknesses. In patients with a poor prognosis, a holistic form of care known as palliative care becomes more appropriate. This has been described as the active total care of patients whose disease is incurable and where the control of physical, psychological, social, and spiritual problems is paramount.7 The reality of its practical delivery is almost exclusively confined to malignant disease.8 But Palliative care is not synonymous with terminal care.. There is often no clearly identifiable point at which management changes from active supportive therapy to palliative care, and it is usually a matter of experienced clinical Judgement. Palliative care may be used in addition to the regular treatment in meeting the palliative care needs of patients in their trajectory of illnesses.

NEED OF THE STUDY:

According to the national cancer registry data 2001 , the estimated incidence of cancer in Indian Males are about 72.1 per 1 lakh population and 82.1 per 1 lakh population in females. In India approximately 2 – 2.5 million cases of cancer are there at any given point of time with around 7 lakh new cases being detected each year.

According to the World Health Organization an estimated 3 million people die due to chronic obstructive pulmonary disease every year, making it the fourth leading cause of death in the world. Muray (1997) . Jindal (2001) estimates the COPD prevalence varied from 3% to 8% amongst Indian males and approximately 2.5% to 4.5 % among Indian females. The Health Related Quality of Life is severely affected by the disease as well due to premature mortality.

Advanced heart failure (HF), defined by the American College of Cardiology and the American Heart Association as stage D, is the end of the HF disease spectrum in which symptoms are present at rest despite optimal medical management. Heart failure is the third most common cardiovascular disease in the US affecting 2 per cent of the U.S. population, or almost 5 million people. More than 500,000 new cases are diagnosed each year.. Around 30 to 40 per cent of patients die from heart failure within 1 year after receiving the diagnosis. Hunt (2009). As HF enters advanced stage, physical and spiritual sufferings increase at the same time that patients face a crisis.

“SEEK- Screening and Early Evaluation of Kidney Disease” (2012) , reported a very high prevalence of 17.4% of CKD . The Indian CKD Registry has 63,538 patients enrolled, 70% of them males and 73.6% of them have CKD stage 4 and 5. These patients experience symptoms such as nausea, lethargy, pain, constipation and have increased requirement for palliative care.

Figure 1. General trajectories of function and well-being over time in eventually fatal chronic illness.

Courtesy JAMA 2001. ;285:925-32. 2001 American Medical Association.

It is apparent that the palliative approach which focuses on symptom management, maintenance of a reasonable quality of life, good communication, and practical and emotional support for the family carers is necessary and should be routinely integrated into a range of chronic debilitating illnesses like Cancers, AIDS and degenerative neurological disorders and also for heart disease, chronic lung disease, dementia, stroke and ESRD. It has been only recently realized that this population might have an equally poor health status, and have palliative needs similar to the oncology population with symptoms like fatigue, anxiety, anorexia, constipation and Dyspnea. Etc. But their needs that qualify them to receive comfort care or palliative care were not recognized or met.

Studies conducted previously focused on the quality of life and the variety of coping strategies of patients with Cancers only. Since the early 1990s many studies have been published outlining the unmet needs of these patients. Recently some studies have compared the needs of patients with non malignant disease and cancer to identify the similarities and differences. In 2009. O Leary conducted a cross-sectional comparative cohort study of palliative care needs among 50 HF patients and 50 cancer patients. Result showed that both patient cohorts were statistically identical in terms of symptom burden, emotional wellbeing, and quality-of-life scores.

A review of a number of studies was helpful to identify the gap in integration of palliative care and this study was undertaken to further explore on the gap in main streaming care for non malignant illnesses..So the aim of the study was to know Palliative care Needs, Psychological morbidity, Quality of Life, Coping Strategies and Satisfaction with Care among Patients with Cancer and End stage Organ diseases.

So A comparative Cohort study to assess the Palliative care Needs, Psychological morbidity, Quality of Life, Coping Strategies and Satisfaction with Care among Patients with Cancer and End stage Organ diseases was undertaken at a selected Hospital, Chennai with the following objectives.

OBJECTIVES:

• To assess and compare the Palliative care needs, Psychological morbidity, Quality of Life, Coping strategies and satisfaction with care among the Patients with Cancer and End stage Organ diseases.

• To determine the association between the Palliative care needs, Psychological morbidity, Quality of Life, Coping strategies, satisfaction with Care demographic and clinical variables of Patients with Cancer and End stage Organ diseases.

A cross-sectional comparative cohort study was carried out at Apollo Main Hospitals and Apollo Specialty Hospitals, Chennai between July 2011 and December 2011. Eligible patients were 30 patients with cancer and end stage diseases totaling 30 with 6 patients categorized under each : COPD, ESRD, DCLD, HF and CVA diagnosed by Primary Consultant based on the following diagnostic criteria with the evaluation by clinical ﬁndings and biochemical test, ultrasound / radiology Imaging.

• Severe COPD (forced expiratory volume in one second (FEV1) <0.75l by Spirometry and hospitalization.

• Chronic Kidney Disease Stage IV or V undergoing thrice-weekly hemodialysis,

• Decompensated Liver Disease –Pugh Child Classification: Grade C (Score 10-15)

• Heart Disease NYHA Class II to IV Failure

• CVA, AHA>SOC) Neurological Domain1, Severity of impairment B or more, level of functioning 2 or more

• were selected using purposive sampling technique.

Patients aged 18-80 years, males and female, can understand Tamil / English / Bengali and patients who qualified with a score of more than 4 in the JCIA Palliative Screening tool were enrolled consecutively into the study. Exclusion criteria were the concomitant presence of hepatic encephalopathy, malignancy, GCS<14, on Mechanical Ventilation and those who refused to participate in the study.

The study protocol was approved by the Hospital Ethical Committee and it was carried out according to the ICMR Guidelines. Written informed consent was obtained prior to the study.

METHODOLOGY:

Materials and Methods

The baseline data was collected from the patient and their family care givers as informants and patient records and recorded in demographic variable and clinical variable proforma. The participants were asked to respond to the self administered questionnaire.

HRQL instruments (dependent variables):

The short-form 36 (SF-36) heath survey was self-administered to the study participants. The SF-36 consists of 36 items and constituted by two scales, the physical health scale comprising of the domains of physical functioning, role-physical, bodily pain and general health. The mental health scale which comprises of the 4 domains of vitality, social functioning, role-emotional and mental health. The scores range from 0 to 100 with higher scores reﬂecting a better perception of health. The domain scores were calculated according to standard reference.

Hospital Anxiety and Depression Scale (HADS)

Psychological problems can influence the Quality of life and so the anxiety and depression was assessed by the Hospital Anxiety and Depression Scale (HADS). It is a brief scale with seven items evaluating anxiety (HADS-A) and seven items to measure depression (HADS-D)].. Internal consistency (Cronbach's alpha) was computed for the HADS-A and HADS-D and determined to be 0.83 and 0.71 respectively.

Social Support Likert Scale.

Self reported data from patient or family members in response to questions on Availability of medication, Supportive equipment etc, information regarding disease and treatment and Agencies for social support was verified by observation and documentation.

Patients were asked to grade their satisfaction on a categorical scale of 1–7 where 7 represented “extremely satisfied” and 1 “extremely dissatisfied”.

Craven Coping strategies Scale

The coping strategies used by these patients were evaluated using the Standardized Craven Coping strategies Scale with 60 items Survey Instrument in which participants were asked to rate the frequency of use of a particular coping strategy both positive and negative .

Analysis of Data

Statistical data: Data was analysed by Descriptive and Inferential statistics using the Statistical Package for the Social Sciences (SPSS.7).

RESULTS AND DISCUSSION:

Demographic Characteristics of the study population

The majority were male (62.7%, 73.3 %), Married (100%,93.3%), had more than Higher Secondary education, belonged to middle income group of more than Rs.30,000 p.m (80%, 76.6%), in both groups but the socioeconomic status of CLD group was lower, and could be due to inability to go to regular work.

Clinical Variables

Table :1 Clinical Variables of Cancer Patients and Patients with End Stage Disease.

Clinical Variables	Patients With Cancer		Patients with End Organ Disease
	N	%	N	%
ECOG
4	24	80	8	24.2
5	6	20	16	48.5
6			6	18.2
Body Mass Index
19 – 24.9 kg/m²	22	73.3	17	56.4
25 – 29.9 kg/m²	8	26.6	13	43.6
Comorbid Conditions
No	22	73.3	20	71.4
Yes	6	20	8	26.6
DM/ HT	-	-	-	-
BA/COPD/APD	-	-	-	-
Site
Head and Neck andNeuro	5	16.6	6	20
Gastro intestinal	4	13.3	-	-
Reproductive Organs	8	26.4	-	-
Genito Urinary	4	13.3	6	20
Hematopoietic	5	16.6	-	-
Respiratory	4	13.3	6	20
Cardiovascular	-	-	6	20
Staging
Stage 0
Stage I	11	36.7	-	-
Stage II	19	63.3	-	-
Stage III	-	-	16	48.3
Stage IV	-	-	14	51.7
Chemotherapy	18	60	-	--
Radiation therapy	12	40	-	-
Any other- Specify	-	-	30	100
Breathlessness
No	25	83.3	24	80
Yes on O₂	5	16.6	6	20
Fatigue
Non debilitating	21	70	18	60
Debilitating	9	30	12	40
ADL
Completely Independent	26	86.7	14	46.6
Requires assistance or assistive devices	4	13.3	16	58.54
Pain
No pain or mild bearable pain	23	79	21	70
Pain and require Use of other Adjuvant Medication	7	21	9	30
Pain and Non Pharmacological /Complementary Therapies	-	-	-	-
Sleep disturbances
Nil or Rare	22	72.6	20	70
Moderate often	8	26.4	10	30
Nausea
No	15	50	17	57.7
Yes	15	50	13	43.3
Nutritional Problem
Normal	20	66.6	16	58.4
NG/ Gatrostomy/ Jejunostomy/ TPN	10	33.3	14	46.6
Bowel Pattern
Regular	25	83.4	22	72.6
Constipation	5	16.6	8	26.4
Bowel or bladder Management
Managed self or with Condom / CBD/	27	90	24	80
Incontinent or Colostomy	3	10	6	20

* P < 0.05 **p < 0.01***p < 0.001

A Significant percentage of patients (26.6%, 43.6%) had a BMI of >25% which may not reflect the Nutritional status but more on fluid retention associated with End Stage Renal, Liver or Heart Disease. The majority of end stage had Dyspnea (16.6%,20%) , Pain (21%, 30%), Nausea (50%, 43.3%), Constipation (16.6%, 26.4%), Debilitating Fatigue (30%, 40%), Sleep Disturbances (26.4%, 30%) nutritional problem (33.3%,46.6%) , Incontinence (10%,20%) compared to patients with cancer.

Laugsand, et al (2009) studied the intensity and severity of symptoms and the nature of treatment in 3,030 pts in 143 Countries. Pain was treated with WHO pain ladder step I (n = 374), II (n = 497), and III (n = 1,567). Patients with generalized weakness (50 percent), fatigue (48 percent), anxiety (28 percent), anorexia (26 percent), constipation (18 percent), focal weakness (18 percent), depression (18 percent) and dyspnoea (15 percent).

Palliative Care Needs of People with Cancers and other End Stage Diseases

Fig :1 Palliative Care Needs of People with Cancers and other End Stage Diseases

Table;3 Coping strategies used by Patients with Cancer and Other End Stage Disease

Type of Coping	Oncology							End organ disease
Type of Coping	No	%	Little	%	Medi	%	Lot	%	No	%	Little	%	Medium %	%	Lot	%
Positive Reinterpretation	0	0	3	10	12	40	9	30	0	0	6	20	15	50	12	40
Mental Disengagement	12	30	12	40	0	0	0	0	9	30	15	50	3	10	0	0
Venting of Emotions	6	20	9	30	9	30	0		9	30	12	40	9	30	0	0
Social Support	0	0	3	10	12	40	9	30	0	0	6	20	12	40	9	30
Active Coping	0	0	3	10	18	60	3	10	0	0	9	30	15	50	3	10
Denial	12	40	6	20	6	20	0	0	9	30	12	40	12	40	0	0
Religious Coping	0	0	0	0	0		24		0	0	0	0	3	10	24	80
Humor	15	50	6	20	3	10	0	0	18	60	0	0	0	0	12	40
Behavioural Disengagement	3	10	9	30	6	20	0	0	6	20	0	0	0	0	0	0
Restraint	0	0	6	20	15	50	3	10	0	0	0	0	0	0	3	10
Use of Emotional andsocial Support	0	0	6	20	18	60	0	0	0	0	0	0	0	0	0	0
Substance Abuse	9	30	15	50	0	0	0	0	12	40	9	30	0	0	0	0
Acceptance	0	0	6	20	12	40	2		0	0	6	20	15	50	3	10
Support of Competitive Activities	3	10	3	10	15	50	3	10	6	20	3	10	12	40	3	10
Planning	0	0	3	10	18	60	3	10	6	20	3	10	15	50	3	10

Variables	Patients With Cancer		Patients with End Organ Disease		‘t’ Value
Variables	Mean	S.D	Mean	S.D
Medical	4.23	0.77	3.36	0.85	4.162
Financial	2.07	0.58	1.66	0.66
Social /Community	2.06	0.45	1.43	0.73
Communication	3.77	0.63	4.16	0.95
Information	2.5	0.51	3.27	0.58
Total Satisfaction	14.63	1.56	13.9	1.95	1.60

Palliative Care Needs of People with Cancers and other End Stage Diseases

Fig :1 Palliative Care Needs of People with Cancers and other End Stage Diseases

Depression subscale of Health Anxiety and Depression Scale (HADS) for the two groups

Quality of life of patients with cancer and end stage organ disease

Fig:3 SF-36 Domains Quality of Life Scores of people with Cancer and End Stage Disease.

Assessment of medical and social support

Table : 2 Assessment of medical and social support

CONCLUSION:

In Conclusion, Patients with patients with end stage had increased level of Palliative care needs and a lower quality of life compared to patients with Cancer, many of them have lot of information requirements and psychological problems.