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EFFECTIVE KEY WORKERS REDUCE THE NEED FOR CANCER SUPPORT GROUPS: RESULTS OF A POPULATION BASED SURVEY FROM GREATER MANCHESTER CANCER PATHWAY BOARD (GMCPB).
Author(s): ,
Jo Tomlins
Affiliations:
The Christie NHS Foundation Trust,Manchester,United Kingdom
,
Catherine Wardley
Affiliations:
Pennine Acute NHS Trust,Manchester,United Kingdom
,
Catriona Quillinan
Affiliations:
Central Manchester NHS Foundation Trust,Manchester,United Kingdom
,
Jo Golding
Affiliations:
Wrightington, Wigan and Leigh NHS foundation Trust,Manchester,United Kingdom
,
Erayna Cowell
Affiliations:
Wrightington, Wigan and Leigh NHS foundation Trust,Manchester,United Kingdom
,
Anne-Marie Kelly
Affiliations:
The Christie NHS Foundation Trust,Manchester,United Kingdom
,
Kathryn Bolton
Affiliations:
stockport NHS foundation Trust,Manchester,United Kingdom
,
Mike Dennis
Affiliations:
The Christie NHS Foundation Trust,Manchester,United Kingdom
Nicola Remmington
Affiliations:
Greater Manchester Cancer Pathway Board,Manchester,United Kingdom
(Abstract release date: 05/18/17) EHA Library. Tomlins J. 06/24/17; 181790; S503
Jo Tomlins
Jo Tomlins
Contributions
Abstract

Abstract: S503

Type: Oral Presentation

Presentation during EHA22: On Saturday, June 24, 2017 from 16:30 - 16:45

Location: Room N109

Background
Cancer patient support groups appear to provide an important source of support to many patients and carers.  In recent years there has been an increasing focus in the UK for services to provide cancer support groups, however it is unclear what proportion of patients believe access to these support groups would improve their experience of living with and beyond cancer.

Aims
A patient experience survey was undertaken by the Haematology-Oncology GMCPB across 10 NHS hospital trusts, where there are a number of cancer support groups.

Methods
The sample for the survey included all adult (aged >16) patients with a confirmed diagnosis of a haematological cancer who attended a haematological oncology outpatient appointment during a 4 month period (June-September 2016). The survey was available for competition on paper or online and was completed anonymously. A translation/interpretation facility was not provided for patients whose first language was not English (due to funding restraints).

Results
277 responses were returned with 1 response excluded (non-haematological malignancy). Haematological diagnoses included acute leukaemia (n=40), chronic leukaemia (n=35), lymphoma (n=62), myeloma (n=102), MDS (n=15), MPD (n=12), other (n=2) and not specified (n=7). 257 (93.1%)  patients had received anticancer therapy, 218 (79%) were receiving treatment at the time of survey and 54% had ongoing symptoms related to their treatment or cancer. 197 (71.4%) patients did not want access to a support group, 23 (19%) wanted access, 51 (8.3%) were not aware of the possibility and 6 (1.8%) did not respond. 51.8% of patients were aware of the existing support groups, 38.8% were not sure, 2.9% were not aware and 1.8% did not respond.

The cohort of patients who did or did not want access to a support group was analysed further. 88% of patients had been given a key worker (eg clinical nurse specialist, research nurse, advanced nurse practitioner or nurse clinician); of the those 88% were satisfied and 1% were partly satisfied with the support they had received with 11% not responding.  93% (n=231) of patients were satisfied with the information they had received at diagnosis and 90% (n=224) felt their diagnosis had been given sensitively. Only 20% of patients currently on treatment wanted access to a support group and 24% not on treatment wanted access to a support group. Date of diagnosis was divided into three groups. Grp A: before 2005 (n=15), Grp B: after 2006 (n=229) and not stated (n=14). There was no difference in the three groups when asked if they wanted access to support group (13%, 22%, 7% respectively; p=0.3) or awareness that support group was available (40%, 57%, 50% respectively; p=0.6). There were additional comments from patients that support from family and online forums in addition to key workers was extremely valuable to them.
On univariate analysis patients who were satisfied with their key worker support did not want access to a support group (p=0.04). There was no effect on wanting access to a support group and diagnosis (p=0.67), treating hospital (p=0.5), information given (p=0.6), need for in-patient treatment (p=0.3), quality of care (p=0.8) or satisfaction with overall care (p=0.8).

Conclusion
Our results suggest that a large majority of patients with a haematological malignancy do not want access to a cancer support group but providing satisfactory support through key workers and other health care professionals is likely to achieve better patient experiences.

Acknowledgements: We would like to acknowledge the members of the GMCPB and patients for their contribution to the survey.

Session topic: 35. Quality of life, palliative care, ethics and health economics

Keyword(s): Supportive care, Quality of Life, Hematological malignancy

Abstract: S503

Type: Oral Presentation

Presentation during EHA22: On Saturday, June 24, 2017 from 16:30 - 16:45

Location: Room N109

Background
Cancer patient support groups appear to provide an important source of support to many patients and carers.  In recent years there has been an increasing focus in the UK for services to provide cancer support groups, however it is unclear what proportion of patients believe access to these support groups would improve their experience of living with and beyond cancer.

Aims
A patient experience survey was undertaken by the Haematology-Oncology GMCPB across 10 NHS hospital trusts, where there are a number of cancer support groups.

Methods
The sample for the survey included all adult (aged >16) patients with a confirmed diagnosis of a haematological cancer who attended a haematological oncology outpatient appointment during a 4 month period (June-September 2016). The survey was available for competition on paper or online and was completed anonymously. A translation/interpretation facility was not provided for patients whose first language was not English (due to funding restraints).

Results
277 responses were returned with 1 response excluded (non-haematological malignancy). Haematological diagnoses included acute leukaemia (n=40), chronic leukaemia (n=35), lymphoma (n=62), myeloma (n=102), MDS (n=15), MPD (n=12), other (n=2) and not specified (n=7). 257 (93.1%)  patients had received anticancer therapy, 218 (79%) were receiving treatment at the time of survey and 54% had ongoing symptoms related to their treatment or cancer. 197 (71.4%) patients did not want access to a support group, 23 (19%) wanted access, 51 (8.3%) were not aware of the possibility and 6 (1.8%) did not respond. 51.8% of patients were aware of the existing support groups, 38.8% were not sure, 2.9% were not aware and 1.8% did not respond.

The cohort of patients who did or did not want access to a support group was analysed further. 88% of patients had been given a key worker (eg clinical nurse specialist, research nurse, advanced nurse practitioner or nurse clinician); of the those 88% were satisfied and 1% were partly satisfied with the support they had received with 11% not responding.  93% (n=231) of patients were satisfied with the information they had received at diagnosis and 90% (n=224) felt their diagnosis had been given sensitively. Only 20% of patients currently on treatment wanted access to a support group and 24% not on treatment wanted access to a support group. Date of diagnosis was divided into three groups. Grp A: before 2005 (n=15), Grp B: after 2006 (n=229) and not stated (n=14). There was no difference in the three groups when asked if they wanted access to support group (13%, 22%, 7% respectively; p=0.3) or awareness that support group was available (40%, 57%, 50% respectively; p=0.6). There were additional comments from patients that support from family and online forums in addition to key workers was extremely valuable to them.
On univariate analysis patients who were satisfied with their key worker support did not want access to a support group (p=0.04). There was no effect on wanting access to a support group and diagnosis (p=0.67), treating hospital (p=0.5), information given (p=0.6), need for in-patient treatment (p=0.3), quality of care (p=0.8) or satisfaction with overall care (p=0.8).

Conclusion
Our results suggest that a large majority of patients with a haematological malignancy do not want access to a cancer support group but providing satisfactory support through key workers and other health care professionals is likely to achieve better patient experiences.

Acknowledgements: We would like to acknowledge the members of the GMCPB and patients for their contribution to the survey.

Session topic: 35. Quality of life, palliative care, ethics and health economics

Keyword(s): Supportive care, Quality of Life, Hematological malignancy

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