What should a support program for people with lung cancer look like? Differing attitudes of patients and support group facilitators

Our plain-English summary of What should a support program for people with lung cancer look like? Differing attitudes of patients and support group facilitators, by B. Devitt, A. Hatton, C. Baravelli, et al (Journal of Thoracic Oncology, 2010).

The study

• Authors: B. Devitt, A. Hatton, C. Baravelli, P. Schofield, M. Jefford, L. Mileshkin
• Journal: Journal of Thoracic Oncology
• Published: 2010;5(8):1227-32
• Cited by: 23 articles, as counted by NIH iCite
• Read it: PubMed · Publisher

Abstract

Introduction: Patients with lung cancer have higher levels of unmet need for psychosocial support than those with other cancers. However, uptake of existing support programs by patients with lung cancer is low. We explored this issue by seeking the views of patients and support group facilitators.

Methods: Surveys of a convenience sample of 100 patients with lung cancer and all support group facilitators registered with Cancer Council Victoria (n = 145) were performed. Respondents were asked about preferred content, location, running, and potential barriers to attendance of a lung cancer support program.

Results: The response rate from facilitators was 51%. Fifty-three percent of patients reported willingness to attend a support program, although only 12% had previously attended a group. Patients showed a preference for any program to be held at a hospital (p = 0.01), whereas facilitators preferred a community setting (p < 0.001). Patients preferred facilitation by a health professional, rather than a volunteer p < 0.001), whereas facilitators preferred a volunteer. Patients preferred sessions primarily focused on cancer information provision rather than emotional support, whereas facilitators rated emotional support as highly as cancer information. Overall, patients perceived fewer barriers to attendance than facilitators. Both agreed that a group environment, discussing their cancer, parking, and travel were barriers to attendance.

Conclusions: Disparities in the views of patients and facilitators about the preferred location, type of facilitator, and content of a support program may in part explain the poor uptake of existing support programs by patients with lung cancer and should be considered in the design of future programs.

In plain English

This questionnaire survey from Victoria, Australia, asked what kind of support program people with lung cancer would want. It did not study asbestos exposure, though the 101 responding patients included 5 with mesothelioma. Patients came from lung cancer clinics at a tertiary referral cancer center (101 of 172 eligible responded), and 74 of 145 support group facilitators registered with Cancer Council Victoria also responded. Fifty-three percent of patients said they were likely or very likely to attend a program, though only 12% had used face-to-face support groups. More patients than facilitators favored a hospital setting (66% versus 46%) and a health professional as leader (83% versus 54%). Patients rated treatment and side-effect information more highly, while facilitators rated emotional and spiritual support more highly. Facilitators expected more barriers: 68% thought feeling too unwell would deter patients, compared with 30% of patients. The authors concluded these differing views may partly explain low uptake of existing programs. They noted possible selection bias and the exclusion of very sick patients.

We wrote this plain-English summary from the full article with the help of AI, and a second AI model checked each sentence against the article. It is not the authors' wording; the abstract and the article are their own account.

What the study did and found

• Design: Cross-sectional questionnaire survey of patients and of support group facilitators, comparing their answers
• Who was studied: Adult outpatients with current or previous lung cancer or mesothelioma at a tertiary referral cancer center in Victoria, Australia. 263 were identified over a 12-month period (calendar years not stated), 172 were eligible, and 101 returned questionnaires (59%). The 101 patients were 75 with non-small cell lung cancer, 16 with small cell lung cancer, 5 with mesothelioma and 5 presumed without biopsy. Of the 145 support group facilitators registered with Cancer Council Victoria, 74 responded (51%).
• Exposure: Not an exposure study: no asbestos or other exposure was assessed. The topic was preferences about, and barriers to, support programs. Patients with mesothelioma were eligible, and 2 of the 35 tumor-specific groups run by responding facilitators were asbestos related.
• Main results:
  • Among patients, 54 (53%) said they would be likely or very likely to attend a lung cancer support program.
  • Only 12% of patients had previously accessed face-to-face support groups.
  • Patients preferred a hospital setting (66%) to a community setting (41%), and a health professional (83%) to a volunteer with cancer experience (64%) to run sessions.
  • Facilitators preferred a community location (70%) to a hospital (46%), and slightly preferred volunteer facilitators with cancer experience (61%) to health professionals (54%).
  • Patients valued information about treatments (94 patients, 93%) and side effects (97 patients, 96%) more than facilitators did (56 facilitators, 76%, and 60 facilitators, 81%; p 0.002 for both in Table 2).
  • Spiritual support was rated useful by 47 (64%) of facilitators and by 36 (36%) of patients.
  • Facilitators identified more barriers than patients did. For example, 49 facilitators (68%) thought feeling too unwell would stop people with lung cancer attending, compared with 30 patients (30%).
  • Only 25 facilitators (34%) had ever had a patient with lung cancer attend their support group.
• The authors' conclusion: The authors concluded that differences between patients' and facilitators' views about location, type of facilitator and content may partly explain the poor uptake of existing support programs by patients with lung cancer, and should be considered in designing future programs.
• Limitations the authors state:
  • Possible selection bias, because only some consecutive patients completed the survey, and use of a convenience sample that excluded very sick patients.
  • Patients came from a tertiary referral center, so the needs of patients treated in community practices may differ.
  • Patients with limited English were excluded.
  • Carers were not included.

Topics

The National Library of Medicine indexes this study under subjects our site covers: Lung cancer, Mesothelioma.

Medical terms in this study, explained in our Lexicon: Lung Cancer.

Related studies

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• High performance of F-fluorodeoxyglucose positron emission tomography and contrast-enhanced CT in a rapid outpatient diagnostic program for patients with suspected lung cancer — P. Brocken, H.F. van der Heijden, et al. (2014)
• Managing malignant pleural mesothelioma: experience and perceptions of health care professionals caring for people with mesothelioma — A. Warby, H.M. Dhillon, et al. (2019)
• How are we going to change our attitudes and opinions regarding asbestos and cancer in the next 20 years? — J. Bignon (1992)
• Re: "Changing opinions and attitudes regarding asbestos and cancer 1934-1965" — G. Berry (1992)

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