Palliative care for patients around the time of haematopoietic stem cell transplant: a qualitative study of patients’ perceptions and experiences of unmet need and attitudes towards palliative care involvement

Gemmell, Rebecca; Halley, Angela; Stevens, Anna-Marie; Allam, Alison; Perkins, Margaret; Ethell, Mark; Sriskandarajah, Priya; Droney, Joanne

doi:10.1007/s00520-021-06556-4

Cited by 9 publications

(4 citation statements)

References 37 publications

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“…There is growing interest in developing more integrated services between haematology and specialist palliative care to support advanced care planning in the hope that this will improve shared decision making and reduce undesirable hospital care at end-of-life [ 38 , 39 ]. It is increasingly understood that people with haematological cancers may have unmet palliative care needs and that there can be uncertainty about the optimal timing of palliative care in the patient journey [ 40 ].…”

Section: Discussionmentioning

confidence: 99%

Intensity of care in cancer patients in the last year of life: a retrospective data linkage study

et al. 2022

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Background Delivering high-quality palliative and end-of-life care for cancer patients poses major challenges for health services. We examine the intensity of cancer care in England in the last year of life. Methods We included cancer decedents aged 65+ who died between January 1, 2010 and December 31, 2017. We analysed healthcare utilisation and costs in the last 12 months of life including hospital-based activities and primary care. Results Healthcare utilisation and costs increased sharply in the last month of life. Hospital costs were the largest cost elements and decreased with age (0.78, 95% CI: 0.73–0.72, p < 0.005 for age group 90+ compared to age 65–69 and increased substantially with comorbidity burden (2.2, 95% CI: 2.09–2.26, p < 0.005 for those with 7+ comorbidities compared to those with 1–3 comorbidities). The costs were highest for haematological cancers (1.45, 95% CI: 1.38–1.52, p < 0.005) and those living in the London region (1.10, 95% CI: 1.02–1.19, p < 0.005). Conclusions Healthcare in the last year of life for advanced cancer patients is costly and offers unclear value to patients and the healthcare system. Further research is needed to understand distinct cancer populations’ pathways and experiences before recommendations can be made about the most appropriate models of care.

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Section: Discussionmentioning

confidence: 99%

Intensity of care in cancer patients in the last year of life: a retrospective data linkage study

et al. 2022

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“… 14 Despite the fact that HSCT recipients’ perceptions and needs are currently such critical barriers to PC referral, little research has assessed how HSCT recipients feel about PC and what they see as their own PC needs. 15 …”

Section: Introductionmentioning

confidence: 99%

What do patients think about palliative care? A national survey of hematopoietic stem cell transplant recipients

et al. 2023

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Palliative care (PC) benefits patients undergoing hematopoietic stem cell transplantation (HSCT) but remains under-utilized. Whereas transplant physicians report concerns regarding how patients perceive PC, HSCT recipients' perceptions about PC remain unaddressed. We conducted a multi-site cross-sectional survey of autologous and allogeneic HSCT recipients 3-12 months post-transplant to assess their familiarity, knowledge, and perception of PC, as well as their unmet PC needs. We computed a composite score of patients' perceptions of PC and used a generalized linear regression model to examine factors associated with these perceptions. We enrolled 69.6% (250/359) of potential participants (Median age = 58.1; 63.1% autologous HSCT). Overall, 44.3.8% (109/249) reported limited knowledge about PC and 52% (127/245) endorsed familiarity with PC. Most patients felt hopeful (54%) and reassured (50%) when they heard the term PC; 83% saw referral as a sign their doctor cared about what was happening to them. In multivariate analyses, patients who were more knowledgeable about PC were more likely to have positive perceptions of PC (B = 7.54, SE=1.61, P < 0.001). Patients' demographics, HSCT features, quality of life, and symptom burden were not significantly associated with perceptions of PC. HSCT recipients have positive perceptions of PC, though many have limited knowledge about its role. Patients who were more knowledgeable about PC were more likely to have positive perceptions of PC. These data do not support transplant physicians' negative concerns about how patients perceive PC and underscore the need to further educate patients and transplant physicians about PC.

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“…It improves the quality of life of the older adults and their family members (World Health Organization, 2018 ). The holistic and proactive model of geriatric palliative care can provide emotional support and enhance early symptom control (Gemmell et al, 2021 ).…”

Section: Introductionmentioning

confidence: 99%

“…In China, it has been estimated that about five million people experience a dying process each year (Su, 2019 ), but only 50,000 people had received palliative care, accounting for only one per cent (Su, 2019 ). The most common reasons reported for the low acquisition of palliative care were that the availability of service was limited; and people often lacked awareness and knowledge of or positive attitude towards it and preferred to choose life‐support treatments for a dying patient (Akiyama et al, 2016 ; Gemmell et al, 2021 ; Taber et al, 2019 ).…”

Section: Introductionmentioning

confidence: 99%

Development and validation of a questionnaire to evaluate the knowledge, attitude, behaviour and care preference of family members of Chinese older adults related to palliative care

et al. 2022

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Aim:To develop and validate a questionnaire on knowledge, attitude, behaviour and care preference of family members of Chinese older adults related to palliative care.Design: A descriptive study design and STROBE checklist were applied in this research. Methods:The theoretical framework of the questionnaire was knowledge-attitudebehaviour model. An additional dimension of palliative care preference of family members was set up in the questionnaire. Items were generated from a rapid review of international literature and interviews with 61 family members of the older adults living either in an aged care service organization or the community. The content validity was examined by five experts. A preliminary questionnaire with 69 items was then set up, and its psychometric property was assessed. Results:A final version of questionnaire with 42 items under four dimensions was constructed. The content validity index of the overall questionnaire was 0.93 and of each item ranged 0.80-1.00. The factor loading of all items was higher than 0.50 as per exploratory and confirmatory factor analysis; the average variance extracted for each dimension was higher than 0.50; the composite reliability was higher than 0.90; and the absolute value of the correlation coefficient of each dimension was <0.50 and less than the square root of the average variance extracted. The Cronbach's alpha value and the split-half reliability value of the overall questionnaire were 0.93 and 0.97, respectively.Conclusions: This questionnaire has good validity and reliability, but needs further testing in multi-centered settings.

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Palliative care for patients around the time of haematopoietic stem cell transplant: a qualitative study of patients’ perceptions and experiences of unmet need and attitudes towards palliative care involvement

Cited by 9 publications

References 37 publications

Intensity of care in cancer patients in the last year of life: a retrospective data linkage study

Intensity of care in cancer patients in the last year of life: a retrospective data linkage study

What do patients think about palliative care? A national survey of hematopoietic stem cell transplant recipients

Development and validation of a questionnaire to evaluate the knowledge, attitude, behaviour and care preference of family members of Chinese older adults related to palliative care

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