Objectives: Cancer pain has all the components of total pain such as physical, social, psychological, and spiritual. These components contribute to the overall pain experience in cancer patients. Many instruments have been developed till date to assess the effect of pain in cancer patients but none of the instruments include all components of total pain. In this article, we describe the development and validation of the total pain scale (TPS) for the evaluation of total pain in cancer patients with pain. This study aimed to develop and validate a questionnaire for the evaluation of total pain in cancer patients with pain.
Material and methods: This study included a review of existing pain questionnaires for cancer pain for item pool generation. Items were generated in the Hindi language by six stakeholders to create 23 items to develop TPS. TPS was applied to 300 Hindi-speaking cancer patients. Bivariate correlation was used to reduce the number of items as well as construction of the domain followed by factor analysis to finalise TPS. Confirmatory factor analysis (CFA) was performed for testing the validity and reliability of TPS.
Results: TPS is an 18-item scale composed of four domains (physical, social, spiritual and psychological domain). The internal consistency of TPS and its subscales was found to be very good (a = 0.84-0.88). CFA and structural equation modeling Goodness of fit has confirmed that model 4 is the best fit as it yielded a lesser root-mean-squared error of approximation value of 0.062 and a greater comparative fit index, Tucker-Lewis index value of 0.944. The convergent and divergent validity of TPS and its domain was good.
Conclusion: This study reports TPS to be a brief (18-item), valid, and reliable questionnaire in the Hindi language for assessment of all components of total pain in cancer patients with pain.
Objectives: The purpose of this study was to map ongoing palliative care services and describe the characteristics of providers, recipients, level of care, and approach. Second, it seeks to investigate the difficulties encountered in implementing NPPC in the Puducherry district of UT Puducherry. This study aims to review the challenges in its implementation.
Material and methods: The study using both quantitative and qualitative design, including geospatial mapping of organisations, describing service delivery characteristics and exploring challenges faced in implementing NPPC, was conducted from July 2021 to January 2022. In-depth interviews were conducted with seven healthcare providers, four patients and three caregivers, as well as key informant interviews with six doctors in administration.
Results: Thirteen organisations providing palliative care to population of Puducherry district of union territory Puducherry and neighbouring districts of Tamil Nadu were identified. Mapped organisations were primarily concentrated in urban areas. Morphine was available only at three medical colleges, providing outpatient palliative care services. Non-governmental organisations provided only home-based palliative care services and the hospices provided both in-patient and home-based services. Key barriers perceived by the health system were difficulty in procuring morphine, inadequate personnel and inadequate funding. Few barriers perceived by patients/family were stigma faced in community, psychological challenges and poor quality of care.
Conclusions: Palliative care services are mainly available in urban areas and through private hospices. There is a need to implement palliative care program through the public health system to improve the accessibility in the rural areas.
Purple urine bag syndrome (PUBS) is a complication and a rare phenomenon associated with bacterial colonisation in bladder catheters in which urine turns purple in the tubing and the catheter bag. This condition can be distressing and panicking for the patients and their families as well as the medical staff caring for them. It is an interesting and unusual presentation that affects people with long-term indwelling catheters and chronic constipation. We report one such case in our hospital, a 73-year-old woman with stage 4 cancer of the vaginal vault, post-bilateral percutaneous nephrostomy (PCN) 4 months ago, currently on best supportive care, presented to the emergency room with symptoms of urosepsis, while a purple urine bag may appear innocuous and not need any particular care beyond replacing the catheter and giving the patient the proper antibiotics, it may indicate an occult urinary tract infection (UTI), which can have catastrophic effects in a patient using a urinary catheter for an extended period of time. Only a few examples of PUBS with an underlying nephrostomy have been documented in the literature. This is a case of a palliative care patient who had a poor prognosis despite receiving the right antibiotic treatment for an upper UTI that caused purple staining of the PCN catheter bag. Using this case report as a guide, we could manage a complex UTI in a palliative care context.
Spirituality in paediatric palliative care remains an enigma across both the Eastern and Western worlds. There is no absolute science to it, and it can be a barrier to effective palliative care to be delivered. This article aims to discuss the barriers to and recommendations for discussing this sensitive topic with children and their families to enhance the quality of palliative care rendered, with the aid of case studies to illustrate the underestimated importance of spirituality in paediatric palliative care.
Objectives: Fatigue is a frequent and burdensome symptom in patients with advanced disease in palliative care. However, it is under-assessed and undertreated in clinical practice, even though many treatment options have been identified in systematic reviews. Care pathways with defined and standardised steps have been recommended for effective management in the clinical setting. This paper describes a care pathway for managing fatigue in palliative care patients. This study aims to develop a care pathway with detailed guidance for screening, assessment, diagnosis, and treatment of fatigue in palliative care patients.
Material and methods: A collaborative effort of multidisciplinary clinicians participated in constructing the care pathway. The care pathway was developed using the following steps: (a) Developing an intervention; (b) piloting and feasibility; (c) evaluating the intervention; (d) reporting; and (e) implementation. This paper covers the first step, which includes the evidence base identification, theory identification/development, and process/outcomes modeling. A literature search was conducted to understand the extent of the fatigue problem in the palliative care setting and identify existing guidelines and strategies for managing fatigue. Consistent recommendations emanating from the included papers were then contributed to a care pathway. Patient representatives and palliative care professionals provided feedback on the draft.
Results: The care pathway address the following care processes: (1) Screening for the presence of fatigue; (2) assessment to evaluate the severity of fatigue; (3) diagnostic procedure, including history, physical examination, and laboratory finding; (4) therapeutic management pathway for clinical decision-making; and (5) valuation of treatment effect, using questionnaires, diaries and physical activity monitoring with body-worn sensors.
Conclusion: The development of a care pathway will help to implement regular and structured assessment, diagnosis, and treatment of fatigue for healthcare professionals treating palliative care patients. Reviewing the pathway with a multidisciplinary expert group and field testing the pathway will be the next steps toward implementation.
The need for palliative care is increasing, especially in low- and middle-income countries (LMICs). Higher education institutions (HEIs) have a role to play in developing a skilled palliative care workforce in LMICs. A workshop was held to discuss this issue, and it was attended by experts from around the world. The workshop highlighted the challenges and opportunities for palliative care education in HEIs for LMIC settings. The participants discussed the importance of a collaborative interprofessional approach and advocacy for the inclusion of palliative care into a wide range of curricula. They also expressed the hope to explore possibilities of networks to continue this discussion and incorporate the wider perspectives from primary care and humanitarian practitioners.
Objectives: The aim of our study is to see the efficacy of palliative radiotherapy (RT) for bleeding control in patients with advanced gastric cancer (AGC).
Materials and methods: It is a retrospective review based on observations of 74 AGC patients with a median age of 60 years (range 50-82 years) who had active tumour bleeding and were treated with palliative RT. Treatment response was assessed by both subjective symptom relief and objective change in parameters. Objective response to RT was defined by an increase in the median haemoglobin (Hb) level of patients and a decrease in number of packed red blood cell (RBC) units needed by patients after RT.
Results: Response to haemostatic RT was observed in 52 patients out of 74 patients (70.27%). We observed a significant increase in mean Hb level after palliative RT. Pre-RT mean Hb was 6.14 ± 1.01 and post-RT mean Hb was 7.19 ± 1.75 (P < 0.05). Response to RT was also evident in a significant decrease in the number of packed RBC units post-haemostatic RT. The mean number of pre-RT transfused packed RBC units was 8.28 ± 3.76 and post-RT, it was 4.34 ± 2.91 (P < 0.05). The median overall survival was 90 days and the median transfusion-free survival was 40 days.
Conclusion: RT may be an effective treatment option for bleeding control in AGC. In our study, we observed fair and reasonably durable haemostasis. A success rate of 70.24% was documented with clinical palliation, a higher Hb level and fewer transfusions after RT. This modality for bleeding control is more important and reliable in situations where alternative modalities are not feasible.