Background
The aim of this aspect of the Coping with Lung Cancer project is to:
- Augment existing knowledge and identify global gaps in psychosocial care by surveying member organisations
- Develop a repository of psychosocial oncology care available across the world
- Identify subject matter experts to interview for best practices library
Methods
A 22-question mixed-methods survey was created by a subgroup of psychosocial professionals representing GLCC members from the UK, Ireland, and the United States. In addition to demographic questions, organisations were asked about the psychoeducational, psychosocial, and supportive care services offered by their organisations and those available in their countries or regions. Also asked about were pandemic-related effects on programs and services.
The survey was open from 26 February 4 to April 2024. At the time, 40 organizations were members of GLCC. The survey was sent to 38 with reasonable expectations of responses from 33. Reasons for not sending and for the lack of response expectation were: the nature of the organization’s work (1), changes in leadership (4), and geo-political conflict/influences (2).
Organisations were asked to have someone with knowledge of patient-facing services and comfort with communicating in English to complete the survey. Members were given the option of translating the survey as long as the answers were returned in English.
The goal was a 75% response rate. Of the 33 organisations, 26 responded for a response rate of 85%. Represented were organisations from Argentina, Brazil, Bulgaria, Canada (2), Denmark, Europe, Greece, Ireland, Israel, Italy, Japan, Mexico (2), Portugal, Slovenia, South Africa, The Netherlands, Taiwan, the United Kingdom (2), and the United States (4).
Of the 26 responses, two organisations (Slovenia and one in the United States) focus on risk reduction/early detection and do not offer psychosocial services, resulting in first round analysis of the remaining 24.
Results
Top line results include that 60% of organisations offer support services specific to carers. Nearly 25% offer or partner on breathing improvement assistance. For 68%, services changed when the pandemic hit with 87% of those adding services. 50% lost services, all indicated they hoped to get them back. See infographic for additional results.
Read and download this infographic as a pdf file here: GLCC org survey graphic
Moving forward
In early 2025, the survey was shortened and pandemic-related questions removed. Since the original study, four new members joined GLCC, all have completed the revised survey. Those organizations add Thailand, Hong Kong, Hungary, and India to the list of countries, as well as Australia, which missed the first go-round. 2024 survey responses are being integrated with those from 2025.
A short, annual update survey will be sent at the end of each year to keep the results current.
Responses as of November, 2026
*indicate the two organisations that do not provide psychosocial services
| COUNTRY/ REGION | ORGANISATION |
| Argentina | Fundacion Pacientes de Cancer de Pulmon |
| Australia | Lung Foundation Australia |
| Brazil | Oncoguia Institute |
| Bulgaria | APOZ Bulgarian Cancer Patient Organisation |
| Canada | Canadian Lung Association |
| Lung Cancer Canada | |
| Denmark | Danish Lung Cancer Association Patientforeningen Lungekræft |
| Europe | WALCE Onlus (Women Against Lung Cancer in Europe) |
| Greece | Fairlife Lung/Cancer Care |
| Hong Kong | Cancer Information HK |
| Hungary | Lélek-zet Egyesület |
| India | Lung Connect India Foundation |
| Ireland | Irish Cancer Society |
| Israel | Israel Lung Cancer Foundation |
| Italy | Alliance for Lung Cancer Advocacy, Support, and Education (ALCASE Italia) |
| Japan | West Japan Oncology Group |
| Mexico | Frente Unido por el Cáncer de Pulmón – FUCaPu – (Mexican Front Against Lung Cancer) |
| Breathing Bravely (Respirando Con Valor ) | |
| Portugal | Pulmonale |
| Slovenia | NA VDIH (INSPIRE)* |
| South Africa | Campaign for Cancer |
| Spain | La Asociación Española Contra el Cáncer |
| Taiwan | Formosa Cancer Foundation |
| Thailand | Thai Cancer Society |
| The Netherlands | Longkankernederland |
| UK | Roy Castle Lung Cancer Foundation |
| Asthma + Lung UK | |
| US | CancerCare |
| GO2 for Lung Cancer | |
| Lung Cancer Research Foundation | |
| Prevent Cancer Foundation*
|
