Exploring Perception of Terminally Ill Cancer Patients about the Quality of Life in Hospice based and Home based Palliative Care: A Mixed Method Study.

Abstract

Objectives: The objectives of the study were to evaluate the perceptions and performance of terminally ill cancer patients regarding the quality of palliative care at different settings and to measure their quality of life (QOL) at the end of life.

Material and methods: This comparative, parallel and mixed method study was conducted at the Community Oncology Centre, Ahmedabad, among 68 terminally ill cancer patients as per inclusion criteria; who were receiving hospice (HS)-based and home (HO)-based palliative care under 2 months permitted by the Indian Council of Medical Research. In this parallel and mixed method study, qualitative findings were supplemented by quantitative data with both components executed simultaneously. Interview data were recorded by taking extensive notes during interviews along with an audio recording. Interviews were transcribed verbatim and a thematic approach was adopted. QoL questionnaire ('FACIT© System') was used for the assessment of QOL in terms of four dimensions. Data were analysed using the appropriate statistical test on Microsoft Excel.

Results: The qualitative data (primary component) analysed under five themes - staff behaviour, comfort and peace, enough and consistent care, nutrition and moral support, in the present study favours a HS-based setting more than a HO-based setting. Among all four subscale scores, physical well-being and emotional well-being subscale scores were statistically significantly associated with the place of palliative care. Functional Assessment of Cancer Therapy-General (FACT-G) total score was high among patients getting HO-based palliative (mean = 67.64) care than HS-based palliative care (mean = 56.56) and the difference between total FACT-G scores was statistically significant (unpaired t-test = 2.20, P = 0.03).

Conclusion: Overall, with the primary component favouring HS care and higher scores obtained in HO-based patients, the present study advocates the necessity for palliative services to expand their coverage regardless of whether they are provided at HS or HO, as it has improved the QOL of cancer patients significantly.