Determining the informational needs of family caregivers of people with intellectual disability who require palliative care: A qualitative study

  • 9 November 2020
  • Author: CareSearch
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McKibben L, Brazil K, McLaughlin D, Hudson P.

Objectives:
People with intellectual disabilities are living longer, and many require palliative care. There is a lack of evidence regarding information needs which may exist for their family caregivers. This study aimed to determine the informational needs of family caregivers of people with intellectual disabilities who require palliative care.

Methods:
A qualitative, exploratory design was underpinned by the Transactional Model of Stress and Coping and the Transformative Paradigm. The study involved five Health and Social Care (HSC) Trusts and two Hospices in one region of the United Kingdom. Family caregivers (n = 10) participated in individual interviews. HSC professionals' (n = 28) perceptions of informational needs were explored within focus groups (n = 6).

Results:
Family caregivers reported information needs chiefly concerning the disease, financial entitlements, and practical support which could change over the disease trajectory. Findings evidence the expertise of long-term family caregivers, prior to the end of life. Palliative care and intellectual disability teams acknowledged their role to work in partnership and facilitate access to information. Recommendations were mapped onto a co-designed logic model.

Significance of results:
New insights into the specific informational needs of this family caregiving population. A co-designed logic model presents these needs and how they may be addressed. Central co-ordinators have been advocated for these caregivers. This model could have international applicability for similar family carers, supporting people with other disabilities or cognitive impairment, and should be further explored.

Health-related quality of life in patients with inoperable malignant bowel obstruction: secondary outcome from a double-blind, parallel, placebo-controlled randomised trial of octreotide

  • 9 November 2020
  • Author: CareSearch
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McCaffrey N, Asser T, Fazekas B, Muircroft W, Agar M, Clark K, Eckermann S, Lee J, Joshi R, Allcroft P, Sheehan C, Currow DC.

Background:
This analysis aims to evaluate health-related quality of life (HrQoL) (primary outcome for this analysis), nausea and vomiting, and pain in patients with inoperable malignant bowel obstruction (IMBO) due to cancer or its treatments randomised to standardised therapies plus octreotide or placebo over a maximum of 72 h in a double-blind clinical trial.

Methods:
Adults with IMBO and vomiting recruited through 12 services spanning inpatient, consultative and community settings in Australia were randomised to subcutaneous octreotide infusion or saline. HrQoL was measured at baseline and treatment cessation (EORTC QLQ-C15-PAL). Mean within-group paired differences between baseline and post-treatment scores were analysed using Wilcoxon Signed Rank test and between group differences estimated using linear mixed models, adjusted for baseline score, sex, age, time, and study arm.

Results:
One hundred six of the 112 randomised participants were included in the analysis (n = 52 octreotide, n = 54 placebo); 6 participants were excluded due to major protocol violations. Mean baseline HrQoL scores were low (octreotide 22.1, 95% CI 14.3, 29.9; placebo 31.5, 95% CI 22.3, 40.7). There was no statistically significant within-group improvement in the mean HrQoL scores in the octreotide (p = 0.21) or placebo groups (p = 0.78), although both groups reported reductions in mean nausea and vomiting (octreotide p < 0.01; placebo p = 0.02) and pain scores (octreotide p < 0.01; placebo p = 0.03). Although no statistically significant difference in changes in HrQoL scores between octreotide and placebo were seen, an adequately powered study is required to fully assess any differences in HrQoL scores.

Conclusion:
The HrQoL of patients with IMBO and vomiting is poor. Further research to formally evaluate the effects of standard therapies for IMBO is therefore warranted.

Factors associated with unscheduled care use by cancer decedents: a systematic review with narrative synthesis.

  • 9 November 2020
  • Author: CareSearch
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Mills SEE, Geneen LJ, Buchanan D, Guthrie B, Smith BH. Factors associated with unscheduled care use by cancer decedents: a systematic review with narrative synthesis. BMJ Support Palliat Care. 2020 Oct 13:bmjspcare-2020-002410. doi: 10.1136/bmjspcare-2020-002410. Epub ahead of print.

For people dying with cancer unscheduled care is disruptive. Knowledge of modifiable factors influencing need for unscheduled care might help to minimise these events and identifying factors that cannot be modified help to target efforts. This review of 47 articles found evidence that for people with cancer unscheduled visits are more likely with lung cancer, for pain or breathlessness, and among people receiving radiotherapy towards the end of life. The review also found consistent evidence that unscheduled events are less likely with improved access to analgesia and community-based palliative care, and ongoing GP involvement in care. There was also moderate level evidence for improvement with GP home visits and structured symptom and symptom management training for carers.  Addressing some of these modifiable factors may already help some patients with cancer avoid the disruption of unscheduled visits towards the end of their lives.

Association of Receipt of Palliative Care Interventions With Health Care Use, Quality of Life, and Symptom Burden Among Adults With Chronic Noncancer Illness: A Systematic Review and Meta-analysis

  • 9 November 2020
  • Author: CareSearch
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Quinn KL, Shurrab M, Gitau K, Kavalieratos D, Isenberg SR, Stall NM, et al. Association of Receipt of Palliative Care Interventions With Health Care Use, Quality of Life, and Symptom Burden Among Adults With Chronic Noncancer Illness: A Systematic Review and Meta-analysis. JAMA. 2020 Oct 13;324(14):1439-1450. doi: 10.1001/jama.2020.14205.

In the last four years outcomes from at least 10 trials of palliative care in patients with non-cancer illness have been published. This prompted the authors of this review to examine the evidence for this group in relation to palliative care and acute care use, quality of life (QoL) and symptom burden. Their detailed meta-analysis reveals that recieving palliative care support is significantly associated with less health care use and moderately lower symptom burden. But the available evidence was insufficient to draw conclusions for advance care planning or QoL. While the authors discuss study heterogeneity as a barrier to examining these relationships, they also note that outcomes were improved when the largest study was omitted. That this study was at high risk of bias and involved non-specialist palliative care while most others involved specialists is interesting but far from conclusive. This and comments on the influence palliative care may be having on today’s ‘usual care’ standard and how this might be impacting study outcomes is something many will find of interest.

Patients' experiences of eHealth in palliative care: an integrative review.

  • 9 November 2020
  • Author: CareSearch
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Widberg C, Wiklund B, Klarare A. Patients' experiences of eHealth in palliative care: an integrative review. BMC Palliat Care. 2020 Oct 14;19(1):158. doi: 10.1186/s12904-020-00667-1.

Recently, people with palliative care needs, like many others, have had to find new ways to connect with their care providers. So, this new systematic review of palliative care patient experience of eHealth is timely. With a focus on telemedicine, the review of 12 articles found evidence of mostly positive patient experiences. Age was not a barrier, and video links and apps were found to be convenient and particularly supportive of at home palliative care. The potential to use this technology to improve the experience of patients is highlighted. For example, in-built language translation applications enhanced communication in new ways and the technology platform empowered patients by giving them a greater sense of control over their contact with care providers. However, eHealth uptake by patients was found to be strongly influenced by health professional attitudes towards the technology and reminds us of the critical role of this relationship. This review should encourage increased engagement with a technology that has already arrived.

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