Evidence review: Carer support services

National Guideline Centre (UK)

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Evidence review: Carer support services

End of life care for adults: service delivery

Evidence review H

NICE Guideline, No. 142

National Guideline Centre (UK).

London: National Institute for Health and Care Excellence (NICE); 2019 Oct.

ISBN-13: 978-1-4731-3560-4

Carer support services

1.1. Review question: What are the most clinically and cost-effective support services for carers of (or those important to) people in their last year of life by health and social care professionals?

1.2. Introduction

“There is a resource available around the clock and every day of the year, that can help people to be cared for and die in the place that they want to be, and helps keep them out of hospital, that is low-cost or free to the NHS. That resource is people. We call them carers. We need to invest in supporting carers because without them the system will collapse.” Abridged quote: Simon Chapman. Director. NCPC (2013). It is estimated that in total there are 6.5 million people caring in the UK at any one time and this is set to increase by 60% in the next 30 years.⁴² Over a third of carers give 20 or more hours of care a week.²⁰⁵

Carers can be family; including children, close friends and those who are important to the patient and all have a vital role in the provision of care. They need to be closely involved in decision making, as they are key members of the team and are experts in the patients’ care. This is particularly important if a patient is admitted to hospital and the carer may lose their status. Additionally if the patient has special needs such as learning disabilities or has dementia then it is extremely important that the carer continues to be closely involved. Carers also have their own needs and often need practical and emotional support both during the person’s life and most importantly after bereavement.

There are some specific issues which carers face when caring for someone approaching end of life. This can include coping with emotional, social and spiritual needs and having difficult conversations about the time that is left and the process of dying. Carers have to cope emotionally with the person’s physical changes, understanding the effects of medication which can alleviate or exacerbate symptoms. This can all be particularly important where younger carers are involved. If left unsupported and stretched beyond their developmental and maturity level, caring for a dying adult in childhood can lead to poor mental health with lifelong implications.. Caring for people that are dying can be a positive time, although emotional and sometimes painful. However, if the carer does not have access to the right support at the right time there is a danger that they will become exhausted unable to cope and to continue with their caring role.

It is frequently the carer who has to coordinate care and healthcare professionals. A significant percentage of carers are older and may have pre-existing ill health and need support. Increasingly there are young carers who need particular consideration and appropriate support, without which their caring role can lead to a build-up in resentment which can later cause regret and create complexities in bereavement. Carers need information and access to support both in their role as carer but also for themselves. They need to have information about the illness, what course it may take, what assistance they can expect, what benefits they may be entitled, work related issues, and where children are involved what support may be provided by the school and other organisations.

Carers may face significant losses during the time they are caring and need support and space to discuss these feelings which may include the impending loss of a loved one, anxiety over financial and legal matters, work or education related issues, not being able to participate in social activities, meet colleagues, and friends. These can culminate in isolation, loneliness and depression, which is, heightened once the loved one has died. If the Government’s ambition for meeting people’s preferences at the end of life is to be achieved we need to provide carers with the knowledge, skills and support for this demanding role. To help build resilience they need access to a range of support services that are appropriate to the need, responsive and readily available.

1.3. PICO table

For full details see the review protocol in Appendix A.

Table 1

PICO characteristics of review question.

1.4. Clinical evidence

1.4.1. Included studies

A search was conducted for studies comparing carer support services to support carers of people with progressive life-limiting conditions thought to be entering their last year of life. Twenty papers from eighteen studies were included in the review⁵^,¹²^,⁴⁶^,⁵⁰^,⁵⁴^,⁷¹^,⁷²^,⁸¹^,¹³⁹^–¹⁴¹^,¹⁶⁰^,¹⁶⁴^,¹⁶⁵^,¹⁷⁴^,¹⁸⁴^,¹⁸⁸^,²⁰⁸^,²²⁷^,²⁷⁵; these are summarised in Table 2 below. Evidence from these studies is summarised in the clinical evidence summary below (Table 3). See also the study selection flow chart in Appendix C, study evidence tables in Appendix D, forest plots in Appendix E, and GRADE tables in Appendix F.

1.4.2. Excluded studies

See the excluded studies list in Appendix H.

1.4.3. Summary of clinical studies included in the evidence review

Table 2

Summary of studies included in the review.

See Appendix F for full GRADE tables.

Table 3

Clinical evidence summary:RSV compared to Telephone emotional support for palliative care.

Table 4

Clinical evidence summary: Tailored support compared to Usual care for palliative care.

Table 5

Clinical evidence summary: Psychosocial support compared to Usual care for palliative care.

Table 6

Clinical evidence summary: CHESS + CR compared to CHESS for palliative care.

Table 7

Clinical evidence summary: Patient support compared to Usual care for palliative care.

Table 8

Clinical evidence summary: Psychological support compared to Usual care for palliative care.

Table 9

Clinical evidence summary: Psychological support (early) compared Psychological support (delayed) for palliative care.

Table 10

Clinical evidence summary: CHESS compared to Usual care for palliative care.

Table 11

Clinical evidence summary: Psycho-educational intervention compared to Usual care for palliative care.

Table 12

Clinical evidence summary: Psycho-educational: 2 visits compared to Psycho-educational: 1 visit for palliative care.

Table 13

Clinical evidence summary: Psycho-educational: 2 visits compared to Usual care for palliative care.

Table 14

Clinical evidence summary: Psycho-educational: 1 visit compared to Usual care for palliative care.

Table 15

Clinical evidence summary: Pain management education compared to usual care for palliative care.

Table 16

Clinical evidence summary: Psychological support: grief therapy compared to Usual care for palliative care.

Table 17

Clinical evidence summary: Psychological support: 10 sessions versus Psychological support: 6 sessions for palliative care.

Table 18

Clinical evidence summary: Psychological support: 10 sessions versus Usual care for palliative care.

Table 19

Clinical evidence summary: Psychological support: 6 sessions versus Usual care for palliative care.

Table 20

Clinical evidence summary: Care plan versus Usual care for palliative care.

Table 21

Clinical evidence summary: Emotional therapy versus Usual care for palliative care.

Table 22

Clinical evidence summary: Carer respite compared to Usual care for palliative care.

Table 23

Clinical evidence summary: Carer education compared to Usual care for palliative care.

Table 24

Clinical evidence summary: Combined care compared to Usual care for palliative care.

Table 25

Clinical evidence summary: Education compared to Usual care for palliative care.

Table 26

Clinical evidence summary: Needs assessment compared to Usual care for palliative care.

1.5. Economic evidence

1.5.1. Included studies

Published literature

One health economic studies was identified with the relevant comparison and have been included in this review.²¹⁸ This is summarised in the health economic evidence profile below (Table 27) and the health economic evidence table in Appendix F.

1.5.2. Excluded studies

No health economic studies that were relevant to this question were excluded due to assessment of limited applicability or methodological limitations.

See also the health economic study selection flow chart in Appendix G.

1.5.3. Summary of studies included in the economic evidence review

Table 27

Health economic evidence profile: Carer support services versus no carer support services.

1.5.4. Unit costs

The following costs are illustrative examples of some of the types of resources use costs that might be required for carer support services.

Table 28

Illustrative costs of carer support services.

1.6. Resource costs

Recommendations made based on this review (see section Error! Reference source not found.) are not expected to have a substantial impact on resources.

1.7. Evidence statements

1.7.1. Clinical evidence statements

Emotional/psychological support for carers (8 studies)

A single study reported patient quality of life at different time points in groups receiving psychosocial support or usual care. Results showed no difference between groups at 1 month, but a benefit of carer support at 3 and 6 months compared to usual care (n=25-9; low quality).

Four studies reported patient depression. One study found telephone emotional support for carers to be clinically beneficial compared to home visits conducted by retired senior volunteer (n=28; low quality), while another study found a benefit of telephone counselling compared to usual care (n=39; low quality). One study reported a clinical benefit of psychosocial support compared to usual care at 3 and 6 months, but not a 1 month (n=25-9; low quality). A fourth study found no difference in patient reported depression between groups receiving emotional therapy or usual care (n=36; very low quality).

Three studies reported patient anxiety. A study found a clinical benefit of telephone counselling compared to usual care (n=39; low quality). One study reported a clinical benefit of psychosocial support compared to usual care (n=25-9; low quality). Another study reported a benefit of emotional therapy compared to usual care (n=32; moderate quality evidence).

One study reported patient hopelessness and found no difference between groups receiving emotional therapy or usual care (n=36; very low quality).

One study reported a clinical benefit of patient distress with emotional therapy compared to usual care (n=32; moderate quality evidence)

Carer quality of life was reported by one study comparing interventions of carer psychological support to usual care. Results showed no clinically significant difference between groups (n=69; very low quality).

Seven studies reported carer depression. One study found telephone emotional support for carers to be clinically beneficial compared to home visits conducted by retired senior volunteer (n=28; low quality), while another study found a benefit of telephone counselling compared to usual care (n=39; low quality). Another study found no difference in patient reported depression between groups receiving emotional therapy or usual care (n=36; very low quality). Three studies compared varying forms of psychological support to for carers to usual care, all found no difference between groups (n=69; very low quality, n=231-248; low quality, n=243-288; low quality, respectively). One study compared early intervention of psychological support to delayed support and found no clinically significant difference between groups (n=44; low quality).

Two studies reported carer anxiety. One study reported a benefit of telephone counselling compared to usual care (n=39; low quality). A second study found a clinical benefit of emotional therapy compared to usual care (n=32; moderate quality evidence).

One study reported carer hopelessness and found no difference between groups receiving emotional therapy or usual care (n=36; very low quality).

A single study found a clinical benefit for carer distress with emotional therapy compared to usual care (n=32; moderate quality evidence)

Four studies reported carer burden. One study reported a benefit of telephone counselling compared to usual care (n=39; low quality). One study reported a clinical benefit of psychosocial support compared to usual care (n=25-9; low quality). A third study comparing interventions of carer psychological support to usual care showed no clinically significant difference between groups (n=69; very low quality). A final study found no difference in carer burden between groups receiving emotional therapy or usual care (n=36; very low quality).

Two studies reported carer grief. One compared psychological support to usual care and found no clinically important difference between groups (n=243-288; low quality). Another compared early intervention of psychological support to delayed support and found no clinically significant difference between groups (n=44; low quality).

Care plans/information services for carers (5 studies)

Carer quality of life was reported by two studies. One found a clinically important benefit of a care plan intervention compared to usual care (n=80; low quality). Another found a no difference between a group receiving a needs assessment and information packed to a group receiving usual care (n=116; low quality).

Two studies reported carer depression and anxiety. One study reported a clinically important benefit of a care plan intervention compared to usual care (n=80; low quality). One study found no clinically important difference between a psycho-educational intervention and usual care (n=75-45; low quality).

One study (from two papers) found generally no clinically important difference between a psycho-educational intervention and usual care (n=80-132; low quality). A second reported no difference between a group receiving a needs assessment and information packed to a group receiving usual care (n=116; low quality).

One found a clinically important benefit for carer satisfaction of a care plan intervention compared to usual care (n=80; low quality).

Education services for carers (3 studies)

Two studies reported carer quality of life following carer education. One found a benefit of carer education compared to usual care (n=71; low quality). A second study reported no clinically important difference in physical or social aspects of quality of life between groups receiving pain management education and usual care (n=56; low quality).

One study found no clinically important difference of education compared to usual care for carer burden (n=71; low quality).

Another study reported carer depression, carer satisfaction, and patient satisfaction, comparing an intervention on education to usual care. No clinically important difference was found for any of the outcomes (n=81-86; low quality).

Online services for carers (2 studies)

Two studies reported on the efficacy of an online support system for carers. One compared the online system with and without a clinicians report and found no difference between groups for carer burden or negative mood at 6 months, but found a clinically important benefit with the online support with the clinician report at 12 months (n=90-119; low to moderate quality). Another study compared the online support system to usual care and found no clinically important difference between group for negative mood, and no significant difference in carer burden at 2,4, or 8 months, but a benefit at 6 months (n=82-123; low to moderate quality).

Carer respite services (1 study)

One study compared carer respite to usual care, and reported carer quality of life and carer burden. No clinically important difference was found between groups for either outcome (n=72; low quality).

Patient support compared to usual care (1 study)

One study compared additional patient support to usual care (with the intention to evaluate the effect on the carer), and reported carer quality of life and carer burden. No clinically important difference was found between groups for either outcome (n=78-81; very low to low quality).

1.7.2. Health economic evidence statements

One cost-utility analysis found that improving family conferences for relatives of patients dying in the ICU versus usual care was not cost-effective at threshold of £20,000 per QALY gained (ICER: £23,092.97 per QALY gained); having multicomponent psycho-educational interventions for patients and families versus usual care was not cost-effective at a threshold of £20,000 per QALY gained (ICER: £268,270.12 per QALY gained) and having supportive interventions for informal caregivers versus usual care was not cost-effective at a threshold of £20,000 per QALY gained (ICER: £48,965.06 per QALY gained). This study was assessed as partially applicable with very serious limitations.

1.8. The committee’s discussion of the evidence

1.8.1. Interpreting the evidence

1.8.1.1. The outcomes that matter most

The Committee identified quality of life, and preferred place of care and death as the critical outcomes for identifying people in their last year of life. The following outcomes were identified as important: length of survival, length of stay, length of survival hospitalisation, number of hospital visits, number of visits to accident and emergency, number of unscheduled admissions, use of community services, avoidable or inappropriate admissions to ICU, inappropriate attempts at cardiopulmonary resuscitation, staff satisfaction, patient or carer reported outcomes and carer health.

See tables 7 and 8 in the Methods chapter for a detailed explanation of why the committee selected these outcomes.

For the critically important outcomes, one study reported quality of life of person in their last year of life. Five studies reported quality of life of the carer of person in their last year of life. Five studies also reported quality of life proxies for the person in their last year of life, such as depression or anxiety, which were an indirect outcome quality of life. Sixteen (all) studies reported quality of life proxies for the carer of the person in their last year of life. None of the studies reported actual and preferred place of care or place of death, or longevity of carer. For the important outcomes, two studies reported the carer satisfaction.

1.8.1.2. The quality of the evidence

The quality of evidence ranged from very low to low. This was due to selection and performance bias, resulting in a high risk of bias rating, and imprecision. Indirectness in some interventions and outcomes (for example, an intervention for patients, with an observation on carer outcome) further contributed to the final GRADE rating.

All evidence was obtained from randomised controlled trial studies. As sufficient evidence was identified from studies of an RCT design, observational studies were not included in the analysis.

1.8.1.3. Benefits and harms

The Committee acknowledged the potential for services such as psychological support, information services, education services, online support, respite services, and additional patient care to support and benefit both people in their last year of life and their carers.

The Committee noted the evidence supporting a potential positive effect of supportive interventions on both patient and carer quality of life, with improvements also seen in quality of life proxies such as depression and depression, and reduced carer burden. However, given the inconclusive findings from a number of studies and the heterogeneity of interventions, the Committee were unable to recommend any single carer support service.

The Committee highlighted the variability of interventions, even those offering similar services, such as emotional or psychological support. The Committee agreed this echoed the demand for a range of services to be available to carers, with individualised tailored support offered to carers in accordance to their needs. To achieve this, the Committee wanted to raise awareness of a carer needs assessment and that it should be provided in line with legal care act. No evidence on the specific needs of any of the subgroups listed in the protocol was identified and the committee were unable to confidently recommend any particular service for any one group. The Committee agreed that in their experience carer needs will vary significantly; those of a young carer will be notably different to those of an elderly carer. The committee discussed the importance of individualising the support a carer receives agreeing that if support wasn’t relevant or appropriate it would be at best ignored or at worse would result in disengagement with services potentially resulting in both the carer and the person in the last year of life not receiving the care they need. The Committee added that a carer’s needs may also change as the person in their last year of life’s illness progresses, changes and deteriorates.

Overall, the Committee commented that following the identification of people who are entering the last year of life, services should be in place to provide support for the carers involved, respecting the wishes of patients and carers.

1.8.2. Cost effectiveness and resource use

The Department of Health’s Impact Assessment on the Care Bill ⁶⁸ ‘makes an estimate of the ‘monetised health benefits’ of additional support for carers. This estimates that an anticipated extra spend on carers for England of £292.8 million would save councils £429.3 million in replacement care costs and result in “monetised health benefits” of £2,308.8 million. This suggests (as a ratio) that each pound spent on supporting carers would save councils £1.47 on replacement care costs and benefit the wider health system by £7.88’.

An ADASS report published in March 2015⁶⁹ estimated that for every £1 invested in carers, there is a potential equivalent reduction in local authority cost of £5.90 (£4.90 net reduction), illustrating the importance in carers and their role in supporting social care. A ECORYS report published in May 2017²⁸⁰ on the economic case for supporting young carers for Surrey Young Carers estimated that the Surrey Young Carers has potentially avoided the taxpayer spending just under £3 million over the course of one year by avoiding young carers becoming Child in Need status. Compared to the costs of delivery of Surrey Young carers in 2015/16 this leaves a return on investment of almost £3 for every £1 spent on the service.

The studies identified in the review on carer support included a wide variety of different types of carer support service models. The support models ranged in the type of support offered (for example, emotional, psychological, educational, respite); in the healthcare professional/s responsible for providing or coordinating the support (for example, palliative care nurse, social worker, family caregiver support nurse, physician); how the support was delivered (for example, over the phone, face-to-face) and the frequency and length of the support sessions provided. All of these factors will affect the cost of offering carer support. There is likely to be a positive correlation between the cost of providing the support services for carers and impact the services have on the quality of life of the carers and the patients although this is just an assumption. For example, face to face sessions may cost more to provide than telephone sessions, but they might also be more effective and therefore considered to be worth the additional investment.

The committee agreed that there was not enough information in the studies regarding what the support to carers involved to be able to estimate how much they were likely to cost. For this reason it was not possible to include any unit costs relevant for this question to aid the committee’s consideration of cost-effectiveness.

The committee highlighted that the majority of the studies in the review were evaluating emotional or psychological support services, but that providing carers with practical support on how to care (for example, moving and handling, pain management, financial advice) were equally as important. The committee felt offering this type of support could also lead to downstream cost savings, for example empowering carers to be able to deal with emergency situations could in turn mitigate the need for some patients to be admitted to hospital.

The committee discussed the issue of the identification of carers. Currently the system is failing to identify the majority of people who are caring for someone that is in their last year of life. Therefore even if carer support was provided, the people who would benefit are not identified as being carers and therefore would not have access to the services. The committee came up with a low cost solution to the identification issue - to add a carer section to the forms filled out at the point of the patient’s holistic needs assessment and assessment reviews (for example, a section on the EPaCCS form). The committee then highlighted that once carers are identified, they should then be given a carer assessment to establish their needs and what services they should be offered. Although offering all identified carers referral to a carer assessment would have a significant resource impact (to the local authorities who are responsible for providing carer assessments), the committee stressed that carers are legally entitled to have a carer assessment. There is currently wide scale variation in how carer assessments are performed. They are often provided by the local authority and carried out by social workers but that does not mean that it should not be the responsibility of the health service to refer carers for an assessment. The committee felt that currently the health service is failing to acknowledge the responsibility they have to support carers of people in the last year of life.

The one economic evaluation that was identified (that estimated that the incremental cost effectiveness ratios (ICERs) of the carer support services: having family conferences for relatives of patients dying on the ICU, having multicomponent psycho-educational interventions for patients and families and supportive interventions for informal caregivers of £23,000 £268,270 and £48,965 per QALY gained respectively) was assessed as partially applicable with very serious limitations. As the economic evaluation was not conducted from a UK perspective, and due to a number of other limitations, the committee could not determine whether the interventions would be cost effective in a UK setting.

1.8.3. Other factors the committee took into account

The Committee noted in particular the variance in the emotional and psychological support services presented. The Committee acknowledged the importance of such interventions in supporting carers, and felt more research to identify the most effective psychological support to help carers become less vulnerable and more resilient would be valuable. The Committee agreed that a particular focus should be given to carers who are more vulnerable and less resilient to psychological, and those susceptible to financial or physical distress. Older carers and young carers were highlighted as populations who may be identified in this category.

The Committee acknowledged the evidence provided, but noted there was little available research on the effectiveness of practical support or training services for carers of (or those important to) people in their last year of life. These could include training to provide hands-on care, financial support, or respite services. Providing services to prepare and support carers practically may enable a person in their last year of life to receive care more readily and reduce the demand for care from health care professionals or avoidable care transfers.

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Appendices

Appendix A. Review protocols

Table 29. Review protocol for what are the most clinically and cost-effective support services for carers of (or those important to) people in their last year of life by health and social care professionals?

Table 30. Health economic review protocol

Appendix B. Literature search strategies

The literature searches for this review are detailed below and complied with the methodology outlined in Developing NICE guidelines: the manual 2014, updated 2017 https://www.nice.org.uk/guidance/pmg20/resources/developing-nice-guidelines-the-manual-pdf-72286708700869

For more detailed information, please see the Methodology Review. [Add cross reference]

B.1. Clinical search literature search strategy

Searches for were constructed using a PICO framework where population (P) terms were combined with Intervention (I) and in some cases Comparison (C) terms. Outcomes (O) are rarely used in search strategies for interventions as these concepts may not be well described in title, abstract or indexes and therefore difficult to retrieve. Search filters were applied to the search where appropriate.

Table 31. Database date parameters and filters used

Medline (Ovid) search terms

Embase (Ovid) search terms

Cochrane Library (Wiley) search terms

CINAHL (EBSCO) search terms

PsycINFO (ProQuest) search terms

HMIC (Ovid) search terms

SPP (Ovid) search terms

ASSIA (ProQuest) search terms

B.2. Health Economics literature search strategy

Health economic evidence was identified by conducting a broad search relating to end of life care in NHS Economic Evaluation Database (NHS EED – this ceased to be updated after March 2015) and the Health Technology Assessment database (HTA) with no date restrictions. NHS EED and HTA databases are hosted by the Centre for Research and Dissemination (CRD). Additional searches were run on Medline and Embase for health economics, economic modelling and quality of life studies.

Table 32. Database date parameters and filters used

Medline (Ovid) search terms

Embase (Ovid) search terms

NHS EED and HTA (CRD) search terms

Appendix C. Clinical evidence selection

Figure 1. Flow chart of clinical study selection for the review of carer support services

Figure 2. Flow chart of health economic study selection for the guideline

Appendix D. Clinical evidence tables

Download PDF (564K)

Appendix E. Forest plots

E.1. Allen 2014 – RSV compared to Telephone emotional support for palliative care

Figure 3. QoL: Depression (CESD)

Figure 4. Carer QoL: Depression (CESD)

E.2. Badr 2015 – Tailored support compared to Usual care for palliative care

Figure 5. QoL: Depression (PROMIS)

Figure 6. QoL: Anxiety (PROMIS)

Figure 7. Carer QoL: Depression (PROMIS)

Figure 8. Carer QoL: Anxiety (PROMIS)

Figure 9. Carer QoL: Burden

E.3. Chan 2016 – Psychosocial support compared to Usual care for palliative care

Figure 10. Quality of life (MQOL) at 1 month

Figure 11. Quality of life (MQOL) at 3 month

Figure 12. Quality of life (MQOL) at 6 month

Figure 13. QoL: Anxiety at 1 month

Figure 14. QoL: Anxiety at 3 month

Figure 15. QoL: Anxiety at 6 month

Figure 16. QoL: Depression at 1 month

Figure 17. QoL: Depression at 3 month

Figure 18. QoL: Depression at 6 month

Figure 19. Carer QoL: Burden at 1 month

Figure 20. Carer QoL: Burden at 3 month

Figure 21. Carer QoL: Burden at 6 month

E.4. Chih 2014 – CHESS + CR compared to CHESS for palliative care

Figure 22. Carer QoL: Burden at 6 month

Figure 23. Carer QoL: Burden at 12 month

Figure 24. Carer QoL: Negative mood at 6 month

Figure 25. Carer QoL: Negative mood at 12 month

E.5. Clark 2006 – Patient support compared to Usual care for palliative care

Figure 26. Carer quality of life (LASA) at 4 weeks

Figure 27. Carer quality of life (LASA) at 8 weeks

Figure 28. Carer quality of life (LASA) at 27 weeks

Figure 29. Carer QoL: Burden at 4 weeks

Figure 30. Carer QoL: Burden at 8 weeks

Figure 31. Carer QoL: Burden at 27 weeks

E.6. Dionne-odom 2015 – Psychological support compared to Usual care for palliative care

Figure 32. Carer quality of life (CQOL-C)

Figure 33. Carer QoL: Depression (CESD)

Figure 34. Carer QoL: Burden (objective subscale)

Figure 35. Carer QoL: Burden (demand subscale)

Figure 36. Carer QoL: Burden (stress subscale)

E.7. Dionne-odom 2015 – Psychological support (early) compared to Psychological support (delayed) for palliative care

Figure 37. Carer QoL: Depression (CESD)

Figure 38. Carer QoL: Grief (PG13)

E.8. Dubenske 2013 – CHESS compared to Usual care for palliative care

Figure 39. Carer QoL: Burden at 2 months

Figure 40. Carer QoL: Burden at 4 months

Figure 41. Carer QoL: Burden at 6 months

Figure 42. Carer QoL: Burden at 8 months

Figure 43. Carer QoL: Negative mood at 2 months

Figure 44. Carer QoL: Negative mood at 4 months

Figure 45. Carer QoL: Negative mood at 6 months

Figure 46. Carer QoL: Negative mood at 8 months

E.9. Hudson 2007 – Psycho-educational intervention compared to Usual care

Figure 47. Carer QoL: Anxiety (HADS) at 4 weeks post intervention

Figure 48. Carer QoL: Anxiety (HADS) at 8 weeks post patient death

E.10. Hudson 2013/2015 – Psycho-educational: 2 visits compared to Psycho-educational: 1 visit for palliative care

Figure 49. Carer QoL: General Health Questionnaire (GHQ)

E.15. Kissane 2016 – Psychological support: 10 sessions vs Psychological support: 6 sessions

Figure 56. Carer QoL: Depression (BDI-II) at 6 months

Figure 57. Carer QoL: Depression (BDI-II) at 13 months

Figure 58. Carer QoL: Grief (CGI) at 6 months

Figure 59. Carer QoL: Grief (CGI) at 13 months

E.16. Kissane 2016 – Psychological support: 10 sessions vs Usual care

Figure 60. Carer QoL: Depression (BDI-II) at 6 months

Figure 61. Carer QoL: Depression (BDI-II) at 13 months

Figure 62. Carer QoL: Grief (CGI) at 6 months

Figure 63. Carer QoL: Grief (CGI) at 13 months

E.17. Kissane 2016 – Psychological support: 6 sessions vs Usual care

Figure 64. Carer QoL: Depression (BDI-II) at 6 months

Figure 65. Carer QoL: Depression (BDI-II) at 13 months

Figure 66. Carer QoL: Grief (CGI) at 6 months

Figure 67. Carer QoL: Grief (CGI) at 13 months

E.18. Leow 2015 – Care plan compared to Usual care for palliative care

Figure 68. Carer quality of life (CQOL-C)

Figure 69. Carer QoL: Depression anxiety stress scales

Figure 70. Carer satisfaction (social support)

E.19. McLean 2013 – Emotional therapy compared to Usual care for palliative care

Figure 71. QoL: Depression (BDI-II)

Figure 72. QoL: Hopelessness (BHS)

Figure 73. Carer QoL: Depression (BDI-II)

Figure 74. Carer QoL: Hopelessness (BHS)

Figure 75. Carer QoL: Burden (time subscales)

Figure 76. Carer QoL: Burden (difficulty subscales)

E.20. McMillan 2006 – Carer respite compared to Usual care for palliative care

Figure 77. Carer quality of life (CQOL-C)

Figure 78. Carer QoL: Burden (patient symptom)

Figure 79. Carer QoL: Burden (task)

E.21. McMillan 2006 – Carer education compared to Usual care for palliative care

Figure 80. Carer quality of life (CQOL-C)

Figure 81. Carer QoL: Burden (patient symptom)

Figure 82. Carer QoL: Burden (task)

E.22. Onyechi 2016 – Combined care compared to Usual care for palliative care

Figure 83. QoL: Death anxiety

Figure 84. QoL: Distress (K10)

Figure 85. Carer QoL: Death anxiety

Figure 86. Carer QoL: Distress (K10)

E.23. Reinhardt 2014 – Education compared to Usual care for palliative care

Figure 87. Carer QoL: Depression at 3 months

Figure 88. Carer QoL: Depression at 6 months

Figure 89. Carer satisfaction (life) at 3 months

Figure 90. Carer satisfaction (life) at 6 months

Figure 91. Satisfaction (care) at 3 months

Figure 92. Satisfaction (care) at 6 months

E.24. Walsh 2007 – Needs assessment compared to Usual care for palliative care

Figure 93. Carer QoL: CQOL-C

Figure 94. Carer QoL: General Health Questionnaire (GHQ)

Appendix F. GRADE tables

Table 33. Clinical evidence profile: RSV compared to Telephone emotional support for palliative care

Table 34. Clinical evidence profile: Tailored support compared to Usual care for palliative care

Table 35. Clinical evidence profile: Psychosocial support compared to Usual care for palliative care

Table 36. Clinical evidence profile: CHESS + CR compared to CHESS for palliative care

Table 37. Clinical evidence profile: Patient support compared to Usual care for palliative care

Table 38. Clinical evidence profile: Psychological support compared to Usual care for palliative care

Table 39. Clinical evidence profile: Psychological support (early) compared Psychological support (delayed) for palliative care

Table 40. Clinical evidence profile: CHESS compared to Usual care for palliative care

Table 41. Clinical evidence profile: Psycho-educational intervention compared to usual care for palliative care

Table 42. Clinical evidence profile: Psycho-educational: 2 visits compared to Psycho-educational: 1 visit for palliative care

Table 43. Clinical evidence profile: Psycho-educational: 2 visits compared to Usual care for palliative care

Table 44. Clinical evidence profile: Psycho-educational: 1 visit compared to Usual care for palliative care

Table 45. Clinical evidence profile: Pain management education compared to Usual care

Table 46. Clinical evidence profile: Psychological support: grief therapy compared to usual care

Table 47. Clinical evidence profile: Psychological support: 10 sessions vs Psychological support: 6 sessions for palliative care

Table 48. Clinical evidence profile: Psychological support: 10 sessions versus Usual care for palliative care

Table 49. Clinical evidence profile: Psychological support: 6 sessions versus Usual care for palliative care

Table 50. Clinical evidence profile: Care plan compared to Usual care for palliative care

Table 51. Clinical evidence profile: Emotional therapy compared to Usual care for palliative care

Table 52. Clinical evidence profile: Carer respite compared to Usual care for palliative care

Table 53. Clinical evidence profile: Carer Education compared to Usual care for palliative care

Table 54. Clinical evidence profile: Combined care compared to Usual care for palliative care

Table 55. Clinical evidence profile: Education compared to Usual care for palliative care

Table 56. Clinical evidence profile: Needs assessment compared to Usual care for palliative care

Appendix G. Health economic evidence tables

Download PDF (228K)

Appendix H. Excluded studies

H.1. Excluded clinical studies

Table 58. Studies excluded from the clinical review

H.2. Excluded economic studies

There were no excluded economic studies for this review.

Final

Evidence review

Developed by the National Guideline Centre, hosted by the Royal College of Physicians

Disclaimer: The recommendations in this guideline represent the view of NICE, arrived at after careful consideration of the evidence available. When exercising their judgement, professionals are expected to take this guideline fully into account, alongside the individual needs, preferences and values of their patients or service users. The recommendations in this guideline are not mandatory and the guideline does not override the responsibility of healthcare professionals to make decisions appropriate to the circumstances of the individual patient, in consultation with the patient and/or their carer or guardian.

Local commissioners and/or providers have a responsibility to enable the guideline to be applied when individual health professionals and their patients or service users wish to use it. They should do so in the context of local and national priorities for funding and developing services, and in light of their duties to have due regard to the need to eliminate unlawful discrimination, to advance equality of opportunity and to reduce health inequalities. Nothing in this guideline should be interpreted in a way that would be inconsistent with compliance with those duties.

NICE guidelines cover health and care in England. Decisions on how they apply in other UK countries are made by ministers in the Welsh Government, Scottish Government, and Northern Ireland Executive. All NICE guidance is subject to regular review and may be updated or withdrawn.

Bookshelf ID: NBK558762PMID: 32614550

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National Guideline Centre (UK). Evidence review: Carer support services: End of life care for adults: service delivery: Evidence review H. London: National Institute for Health and Care Excellence (NICE); 2019 Oct. (NICE Guideline, No. 142.)
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Evidence review: Carer support services

Carer support services

1.1. Review question: What are the most clinically and cost-effective support services for carers of (or those important to) people in their last year of life by health and social care professionals?

1.2. Introduction

1.3. PICO table

1.4. Clinical evidence

1.4.1. Included studies

1.4.2. Excluded studies

1.4.3. Summary of clinical studies included in the evidence review

1.5. Economic evidence

1.5.1. Included studies

Published literature

1.5.2. Excluded studies

1.5.3. Summary of studies included in the economic evidence review

1.5.4. Unit costs

1.6. Resource costs

1.7. Evidence statements

1.7.1. Clinical evidence statements

Emotional/psychological support for carers (8 studies)

Care plans/information services for carers (5 studies)

Education services for carers (3 studies)

Online services for carers (2 studies)

Carer respite services (1 study)

Patient support compared to usual care (1 study)

1.7.2. Health economic evidence statements

1.8. The committee’s discussion of the evidence

1.8.1. Interpreting the evidence

1.8.1.1. The outcomes that matter most

1.8.1.2. The quality of the evidence

1.8.1.3. Benefits and harms

1.8.2. Cost effectiveness and resource use

1.8.3. Other factors the committee took into account

References

Appendices

Appendix A. Review protocols

Appendix B. Literature search strategies

B.1. Clinical search literature search strategy

B.2. Health Economics literature search strategy

Appendix C. Clinical evidence selection

Appendix D. Clinical evidence tables

Appendix E. Forest plots

E.1. Allen 2014 – RSV compared to Telephone emotional support for palliative care

E.2. Badr 2015 – Tailored support compared to Usual care for palliative care

E.3. Chan 2016 – Psychosocial support compared to Usual care for palliative care

E.4. Chih 2014 – CHESS + CR compared to CHESS for palliative care

E.5. Clark 2006 – Patient support compared to Usual care for palliative care

E.6. Dionne-odom 2015 – Psychological support compared to Usual care for palliative care

E.7. Dionne-odom 2015 – Psychological support (early) compared to Psychological support (delayed) for palliative care

E.8. Dubenske 2013 – CHESS compared to Usual care for palliative care

E.9. Hudson 2007 – Psycho-educational intervention compared to Usual care

E.10. Hudson 2013/2015 – Psycho-educational: 2 visits compared to Psycho-educational: 1 visit for palliative care

E.11. Hudson 2013/2015 – Psycho-educational: 2 visits compared to Usual care

E.12. Hudson 2013/2015 – Psycho-educational: 1 visit compared to Usual care

E.13. Keefe 2007 – Pain management education vs Usual care

E.14. Kissane 2006 – Psychological support: grief therapy vs Usual care

E.15. Kissane 2016 – Psychological support: 10 sessions vs Psychological support: 6 sessions

E.16. Kissane 2016 – Psychological support: 10 sessions vs Usual care

E.17. Kissane 2016 – Psychological support: 6 sessions vs Usual care

E.18. Leow 2015 – Care plan compared to Usual care for palliative care

E.19. McLean 2013 – Emotional therapy compared to Usual care for palliative care

E.20. McMillan 2006 – Carer respite compared to Usual care for palliative care

E.21. McMillan 2006 – Carer education compared to Usual care for palliative care

E.22. Onyechi 2016 – Combined care compared to Usual care for palliative care

E.23. Reinhardt 2014 – Education compared to Usual care for palliative care

E.24. Walsh 2007 – Needs assessment compared to Usual care for palliative care

Appendix F. GRADE tables

Appendix G. Health economic evidence tables

Appendix H. Excluded studies

H.1. Excluded clinical studies

H.2. Excluded economic studies

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