A prospective survey of patient drop-outs in a palliative care setting
Aim: A prospective survey of patient drop-outs was carried out in a palliative care setting to understand the background of patients in the drop-out category. This was to understand the background of patients who drop out and why they drop out.
Keywords: Drop-out category, Missing appointments, Palliative care, Social support
According to the World Health Organization, palliative care is an approach that improves the quality of life of patients and their families facing the problem associated with life-threatening illnesses, through the prevention and relief of suffering by means of early identification, impeccable assessment, and treatment of pain and other problems (physical, psychosocial, and spiritual).  Originally developed for cancer patients, palliative care has now come to encompass those who are chronically ill and/or are bedridden. Thus, paraplegics, those with renal failure and those who need psychiatric support, also come under the purview of palliative care.
Failure to keep appointment is a universal phenomenon and palliative care is no exception. According to Barron, it is disruptive to the health care delivery system in several ways.  Patients may fail to receive care from which they would benefit, and resources are wasted, as per Henderson.  It compromises health service efficiency. It causes the suboptimal use of clinical and administrative staff, financial loss as well as longer waiting times, according to Koshy et al.  Therefore, to understand the background of patients in the drop-out category and possible reasons for the same to minimize the drop-out percentage, a prospective survey of patient drop-outs in a palliative care setting was undertaken.
Patients who had registered at the palliative care clinic in 2009, attended the clinic, and subsequently persistently dropped out for one or other reasons were selected for the study.
The study was undertaken at the clinic run by the Pain and Palliative Care Society, Thrissur, Kerala. The Society is an autonomous NGO, working with nonfinancial support from the District Panchayath and District Hospital, Thrissur. Patients come to the clinic either as referrals from hospitals or by becoming aware of our services through the various awareness programs conducted by the Society. On first arrival, of either patients themselves or their relatives, they are registered by a volunteer. During the registration, apart from personal and family details, the physical, psychosocial, and spiritual concerns are explored and recorded on a case sheet. On every subsequent arrival, the patients are first seen to, by a volunteer, before they meet the doctor. Apart from medicines, the services offered include, regular home visits, nursing care, accessories like wheelchair or cot, as per need, a monthly rice kit (10 kg rice) for the very deserving, and/or educational support for the children of patients. All services are rendered free. Those patients requiring treatments like palliative radiation or those who will benefit from chemotherapy are referred back to specialty hospitals. Transfer to other palliative clinics happen when such facilities are available near the homes of patients or when these are closer to their homes than the Thrissur clinic.
A survey was conducted on 425 patients who had registered in the clinic in 2009 and subsequently dropped out. Selection criteria were based on those patients who failed to attend appointments for 3 months or more. Patients were classified on the basis of age, gender, education, disease, socioeconomic class, distance from the clinic to home, family size or number of members in the family living in the same home, associated morbidities, general health on the basis of symptoms on the first arrival, social support, primary caregiver details, and reasons subsequently found for missing the appointment.
The socioeconomic class was demarcated as well-off, middle class, poor, and very poor. Well-off constitutes those with a luxurious life style, with all major amenities in the home, including vehicle(s), and those who can even now maintain these amenities despite the financial constraints caused by the disease.
Middle class constitutes those with a regular income and a home with no liabilities. Poor constitutes those with a regular confirmed income with/without own home, with/without liabilities on it. The very poor have no daily income.
The general health on the first arrival has been classified as follows: those who can conduct activities of daily living (ADL) alone, ADL with help, and bedridden patients.
All the patients selected for the study were contacted by telephone based on the contact number they gave on the first arrival. Home visit was made if no telephone number was available (only within Thrissur Corporation limits). Nine patients came back for clinic visit subsequent to the telephonic contact.
These patients were also included in the study. All together, the total number of patients was 425. The data were collected, and analyzed statistically using chi-square tests and percentages.
An analysis was made among 425 patients out of 1696 patients registered in 2009. The drop-out rate was 25.06%. Majority of patients 46.12% (n = 196) presented in the 41-60 year age group, followed by 34.35% (n = 146) in the 61-80 year age group.
Of the 425, 240 were males and 185 were females. Regarding educational level, 37.41% had secondary level education (6th to 10th standard), followed by 28.24% in the primary level. A total of 23.53% were illiterate, whereas 3.06% were graduates and above. There was one religious teacher with no formal education, and data were not available for 3.76%.
The number of patients presenting with malignancies were 252. Patients with renal failure and neurological disorders numbered 58 and 38 respectively. Other diseases [conditions] include: Ulcers [n=22], Heart disease [n=10], Orthopaedic problems [n=7], Trauma [n=7], Geriatric [n=5], Gastro-intestinal problems [n=4],AIDS [n=3], Diabetes and hypertension [n=2] each, Others [n=3], Respiratory diseases [n=2], psychological problems and vascular diseases [n=1] each, Data not available [n=8].
In the socioeconomic class, 54.12% fell in the poor category and 20.71% were middle class. The very poor came a close third at 19.53% and 3.06% were well-off. The data were not available for 2.59% of patients.
When the family size was analyzed, 62.35% had four to six family members [Table 1]. Within this category, 43.39% had a family size of four.
Distance of home from the clinic varied from 1 to 125 km, with an exceptional patient coming from 425 km away, who has since then transferred to a nearby clinic.
Among the associated morbidity category, 37.88% had no associated morbidity. Among the significant diseases were diabetes and hypertension, 9.17%; hypertension alone, 7.52%; and diabetes alone, 8.47%.
When the general health on arrival was analyzed, 41.18% needed help to do daily activities and 36.47% could do activities without any help. The bedridden formed 11.29% and data were not available for 11.1%.
Of the primary caregivers, 58.12% were provided care by the spouse. Of these, 74.09% had wives as caregivers and 25.10% had husbands as caregivers. Parents constituted 11.76% of caregivers and 25.88% were provided care, by the extended family, including children. Five people had none to take care of them: two were in an institution for destitute.
Of the people who came for support, 90.82% came for medicine, 3.29% came for educational support for children and rice kit (10 kg rice given to each family per month), and 1.41% came for lymphedema care/wound care. Some (2.12%) expected financial aid which unfortunately could not be provided. Patients coming for accessories accounted for 1.18% (walker, crutches, or cot). Of the 9 patients who returned subsequent to the telephonic contact, the lag period (the period between contact and their second arrival) varied between 1 and 10 months. One patient still misses appointments, only to show up whenever he faces an acute problem. Another patient with diabetic nephropathy showed a lag period of 17 months.
The reasons for dropping out and the percent-wise distribution are given in [Table 2] and [Table 3]. When the reasons for dropping out were analyzed statistically with social support, there was a significant association (P = 0.026). A P-value of <0.05 shows that these are two related attributes. Yule's coefficient of association gave a value of -0.662. The negative value shows that the attributes are inversely associated. When social support increases, the dropping out rate decreases.
A previous study by Oppenheim et al. has shown that rates of appointment missing are generally between 19% and 28%.  In this study also, the rate falls at 25.06%. Reasons cited by Oppenheim include communication problems and lack of a personal physician.  The patient most likely to fail to keep a given appointment is mostly young, coming from a lower socioeconomic group ,, , male,  has a large, unstable family,  and will have little sense of urgency about keeping the appointment. [2,5]
The data presented here show that there is a higher incidence of drop-outs in the middle-aged category, with secondary level education and is from a poor socio-economic class. Family size shows a significant change as most of the patients belonged to a small family. Perhaps since there were none to take care of them within the family, they took refuge in the clinic, only to drop out later on. The distance from home to the clinic did not matter. Slightly more than 50% (52.47%; ADL with help plus bedridden patients) of the patients who dropped out needed help for their daily activities. In this context, it is also significant that 36% could go about their daily activities alone.
The lag period of 17 months for the patients with diabetic nephropathy can be explained by the fact that medicines for patients with renal disease were made available in the clinic only in the recent past.
Yule's coefficient of association generally falls between -1 and +1. The value of -0.662 shows a more than moderate association. The negative value symbolizes that the attributes, social support, and reasons for dropping out are inversely associated. When social support increases, the dropping out rate decreases.
As the awareness of the concept of palliative care spread, the number of clinics also increased. While the number of clinics in the district in 2008 was 11, by the end of 2010, it had increased to 22.
When the same services which are provided here are duplicated elsewhere, closer home, then why not use their services? Some of the patients for whom further treatment is beneficial have been referred to government or private specialty hospitals. A few of the patients whom we visited for feedback said that they were happy and satisfied with the services given to them.
We thank Dr. E. Sandhya for helping with statistical analysis. We also thank the volunteers of the Pain and Palliative Care Society, specifically, Mrs. Shyamala Gopinath, Mrs. Sunanda, and Mrs. T. N. Radha, for help when trying to contact the drop-outs.
[Table 1], [Table 2], [Table 3]