Paents and facilitators agreed that a lung cancer support group should be small and include informaon about lung cancer treatment, side effects and self-care strategies Facilitators Preferred • Support program to be held in a community building • Involvement of a cancer survivor • Predominant focus on social and emoonal support Paents Preferred • Support program to be held at a hospital • Involvement of a health professional • Predominant focus on informaon about lung cancer treatment and self-care 53% of paents responded they would be likely or very likely to aend a support program if it suited their needs. Introducon • High levels of psychosocial distress and support needs among paents with lung cancer • General literature supports benefits of support groups – improve psychosocial well-being • Extensive range of support groups and programs exist in Victoria eg Cancer Connect, Cancer Helpline, Living with Cancer • Uptake by paents with lung cancer is low • Support group parcipants more likely female, younger, more educated, have exisng supports AIMS of Lung Cancer Support Program Project • To determine the support needs of paents and their families with lung cancer • To find out why exisng services are being under-ulized • To develop more appropriate models of support Paent Survey 101 lung cancer paents completed paent survey (response rate 58%) 265 paents screened 91 (34%) paents ineligible • Non-English speaking 61 • Cognive impairment 10 • Too unwell 4 • Parcipang in another study 16 174 eligible paents • 34 (20%) paents declined to parcipate in survey • 39 (22%) paents consented but did not complete survey • 101 (58%) completed survey Paent Demographics • Current smoker 12 (12%) • Self-rated ECOG ECOG 0-1 56 (56%) ECOG 2 – 3 44 (44%) • Non-small cell lung cancer 80 (79%) • Small cell 16 (16%) • Mesothelioma 5 (5%) • Metastac disease 42 (42%) • Receiving acve treatment 35 (35%) • Median me since diagnosis 10 mo (0-97) Facilitator Survey 145 eligible support group facilitators 52% response rate (75 surveys) General Support Group Facilitators 41% of eligible support group facilitators were from general support groups (59 surveys) 61% response rate in “General Support Group” subset Tumour Specific Support Group Facilitators 59% of eligible support group facilitators were from tumour specific support groups (86 surveys) 45% response rate in “Tumour Specific Support Group” subset Facilitator Demographics • Median age (range) 57 (35-79) • Female 58 (78%) • Health professional 31 (42%) • Cancer survivor 26 (35%) • Volunteer 17 (23%) • Completed facilitator training 38 (51%) Data Collecon Method Self-completed surveys of: A convenience sample of 101 lung cancer paents from the Peter MacCallum Cancer Centre (East Melbourne and Bendigo). All support group facilitators affiliated with the Cancer Council Victoria. Respondents of both the paent and facilitator surveys were asked about a lung cancer support program and: • preferred content • preferred locaon • preferred facilitators • potenal barriers to aendance of a support program for people with lung cancer Results Biases in results • Paents from a centre with good supports • Missing the views of the non-responders Conclusion Disparies in the views of paents and facilitators about the preferred locaon, type of facilitator and content of a lung cancer support program may in part explain the poor uptake of exisng support programs by lung cancer paents and should be considered in the design of future programs. Exisng peer support models do not suit the needs of the majority of lung cancer paents. New models and exisng services need further investment and development. Paent preference for ‘support through informaon’ needs to be considered in the design of future models. Areas to consider • Specialist lung cancer nurse coordinators • Accessing lung cancer paents and families through telephone, internet and mul-media resources • Accessing the non-English speaking lung cancer paents and families. What should a support program for paents with lung cancer look like? Differing atudes of paents and support group facilitators. Mileshkin L 1* , Haon A 1 , Baravelli C 1 , Williams P 2 , Duffy M 1 , Schofield P 1 , Jefford M 1,2 1 Peter MacCallum Cancer Centre, Melbourne, Victoria 2 Cancer Council Victoria, Melbourne, Victoria This project was funded by the Australian Government through Cancer Australia
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Patients and facilitators agreed that a lung cancer support group should be small and includeinformation about lung cancer treatment, side effects and self-care strategies
Facilitators Preferred• Support program to be held in a community building• Involvement of a cancer survivor• Predominant focus on social and emotional support
Patients Preferred• Support program to be held at a hospital• Involvement of a health professional• Predominant focus on information about lung cancer treatment and self-care
53% of patients responded they would be likely or very likely to attend a support program if it suited their needs.
Introduction• High levels of psychosocial distress and support needs among patients with lung cancer• General literature supports benefits of support groups – improve psychosocial well-being• Extensive range of support groups and programs exist in Victoria eg Cancer Connect, Cancer Helpline, Living with Cancer• Uptake by patients with lung cancer is low• Support group participants more likely female, younger, more educated, have existing supports
AIMS of Lung Cancer Support Program Project• To determine the support needs of patients and their families with lung cancer• To find out why existing services are being under-utilized• To develop more appropriate models of support
Patient Survey101 lung cancer patients completed patient survey (response rate 58%)
265 patients screened
91 (34%) patients ineligible • Non-English speaking 61• Cognitive impairment 10• Too unwell 4• Participating in another study 16
174 eligible patients• 34 (20%) patients declined to participate in survey • 39 (22%) patients consented but did not complete survey • 101 (58%) completed survey
Patient Demographics• Current smoker 12 (12%)• Self-rated ECOG
ECOG 0-1 56 (56%)ECOG 2 – 3 44 (44%)
• Non-small cell lung cancer 80 (79%)• Small cell 16 (16%)• Mesothelioma 5 (5%)• Metastatic disease 42 (42%)• Receiving active treatment 35 (35%)• Median time since diagnosis 10 mo (0-97)
Facilitator Survey145 eligible support group facilitators
52% response rate (75 surveys)
General Support Group Facilitators41% of eligible support group facilitators were from general support groups (59 surveys)61% response rate in “General Support Group” subset
Tumour Specific Support Group Facilitators59% of eligible support group facilitators were from tumour specific support groups (86 surveys)45% response rate in “Tumour Specific Support Group” subset
Facilitator Demographics• Median age (range) 57 (35-79)• Female 58 (78%)• Health professional 31 (42%)• Cancer survivor 26 (35%)• Volunteer 17 (23%)• Completed facilitator training 38 (51%)
Data Collection MethodSelf-completed surveys of:A convenience sample of 101 lung cancer patients from the Peter MacCallum Cancer Centre(East Melbourne and Bendigo).All support group facilitators affiliated with theCancer Council Victoria.
Respondents of both the patient and facilitator surveyswere asked about a lung cancer support program and:
• preferred content• preferred location• preferred facilitators• potential barriers to attendance of a support program for people with lung cancer
Results
Biases in results• Patients from a centre with good supports• Missing the views of the non-responders
ConclusionDisparities in the views of patients and facilitators about the preferred location, type offacilitator and content of a lung cancer support program may in part explain the poor uptake of existing support programs by lung cancer patients and should be considered in the design of futureprograms.
Existing peer support models do not suit the needs of the majority of lung cancer patients.
New models and existing services need further investment and development.
Patient preference for ‘support through information’ needs to be considered in the design of future models.
Areas to consider• Specialist lung cancer nurse coordinators• Accessing lung cancer patients and families through telephone, internet and multi-media resources• Accessing the non-English speaking lung cancer patients and families.
What should a support program for patients with lung cancer look like? Differing attitudes of patients and support group facilitators.
Mileshkin L1*, Hatton A1, Baravelli C1, Williams P2, Duffy M1, Schofield P1, Jefford M1,2
1 Peter MacCallum Cancer Centre, Melbourne, Victoria2 Cancer Council Victoria, Melbourne, Victoria
This project was funded by the Australian Government through Cancer Australia
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