Supporting the patients with advanced cancer and their family caregivers: what are their palliative care needs?

Abstract

Background: The impact and consequences of cancer on the patients and their family caregivers (FCs) are closely intertwined. Caregivers' burdens can be increased due to the patients' unmet needs and unresolved problems. Additionally, the caregivers' unmet needs may adversely affect their own well-being and the patients' health outcomes. This study aims to determine the palliative care needs and the factors associated with these needs in patients with advanced solid cancer and their FCs. Methods: In a cross-sectional survey, 599 patients with advanced solid tumours and 599 FCs were recruited from the largest ambulatory cancer centre and the inpatient ward of the largest hospital in Singapore. Determinants of patients' and FCs' needs were assessed by the Comprehensive Needs Assessment Tool (CNAT) and CNAT-C respectively. Clinical characteristics of patients were obtained from medical records. Results: The FCs (median age 51 years) were younger than the patients (median age 62 years), and were mostly female (62.6%) whereas the gender distribution of patients was quite balanced (49.2% male and 50.8% female). Both patients and FCs had "information" and "practical support" in their top three domains of palliative care needs. The second highest domain of needs was "psychological problems" (16.4 ± 21.5) in patients and "health-care staff" (23.4 ± 26.5) in FCs. The item that had the highest need score in "information" domain for both patients and FCs was "financial support for patients, either from government and/ or private organizations". Under clinical setting, the inpatients (19.2 ± 16.4) and their FCs (26.0 ± 19.0) tend to have higher needs than the outpatients (10.5 ± 12.1) and their FCs (14.7 ± 14.3). In terms of palliative care, higher total CNAT score was observed in both patients (16.6 ± 12.9 versus 13.3 ± 15.2) and their FCs (25.1 ± 18.6 versus 17.7 ± 16.7) who received palliative care. In terms of patients' KPS scores, patients with lower KPS scores tend to have higher needs. Conclusion: Overall, the findings confirm that patients with advanced cancer and their FCs have many palliative care needs irrespective of their clinical settings. Initiatives and interventions for the development of a comprehensive support system for both patients with advanced cancer and their FCs are warranted and can be derived from these findings.

Need for additional professional psychosocial and spiritual support in patients with advanced diseases in the course of specialist palliative care – a longitudinal observational study

“…These studies also demonstrate that daily living, practical support, information and emotional/psychological support consistently represent the most prevalent unmet support needs [8,27,[30][31][32][33][34][35][36][37][38][39]. In line with the results from our study, a repeatedly mentioned psychological problem causing support need is the unpredictably of future [8, 35,38].…”

“…During SPC, the need for additional support has decreased in most aspects with the same needs representing the "top ve". Literature on patients` support needs mainly relates on cancer patients [8,27,[30][31][32][33][34][35][36][37][38][39].…”

“…Interestingly, during SPC, the need for additional psychosocial and spiritual support was higher in I-SPC. However, higher support needs during inpatient compared to outpatient care in cancer patients have been demonstrated [30].…”

Need for additional professional psychosocial and spiritual support in patients with advanced diseases in the course of specialist palliative care – a longitudinal observational study

“…During SPC, the need for additional support decreased in most aspects with the same needs representing the “top five”. Literature on patients’ support needs mainly relates on cancer patients [ 8 , 30 , 33 – 42 ]. These studies also demonstrate that daily living, practical support, information and emotional/psychological support consistently represent the most prevalent unmet support needs [ 8 , 30 , 33 – 42 ].…”

“…Literature on patients’ support needs mainly relates on cancer patients [ 8 , 30 , 33 – 42 ]. These studies also demonstrate that daily living, practical support, information and emotional/psychological support consistently represent the most prevalent unmet support needs [ 8 , 30 , 33 – 42 ]. In line with the results from our study, a repeatedly mentioned psychological problem causing support need is the unpredictably of future [ 8 , 38 , 41 ].Additional need for professional spiritual support was lower with about 20% at initiation of SPC and about 10% during follow-up indicating that such support is required by a subgroup of patients.…”