'What Matters to Me'

An International Online Survey of People Treating, Affected by and Living With Lung Cancer

Geraldine M Leydon; Maria Guerin; Caroline Eyles; Lesley Jacques; Liz Darlison

Disclosures

Future Oncol. 2012;8(7):883-896. 

In This Article

Abstract and Introduction

Abstract

Aim: Lung cancer is a common malignancy that occurs worldwide and generally has a poor prognosis. Its diagnosis presents significant physical and emotional challenges for patients and their family, friends and caregivers (FFCs). This study aimed to gain insights into patients' and FFCs' perspectives regarding lung cancer and its treatment, as well as physicians' perceptions of patients' thoughts about their illness.
Patients & methods:
An international online survey was conducted, assessing 113 patients diagnosed with non-small-cell lung cancer, 70 corresponding FFCs and 188 treating physicians. Data were collected using an interactive internet-based tool, in order to establish respondents' priorities.
Results:
Interesting differences between patients', FFCs' and physicians' perspectives on lung cancer were revealed. For all respondents, the primary feeling about lung cancer was described as "sadness". Patients were more likely to express a determination to be positive, whereas fear was a common response for FFCs and was a perspective also reported by physicians. Physicians' views on how they had communicated disease information were more positive than those of the patients, with many patients detecting physician hesitancy to communicate negative news.
Conclusion:
This study provides important insights into the self-reported thoughts and feelings of patients with lung cancer, their personal networks of FFCs and the physicians who care for them.

Introduction

Lung cancer is a leading cause of cancer death worldwide, causing up to 1.4 million deaths per year.[101] Aside from the obvious clinical symptoms, patients with lung cancer can suffer significant psychological impacts,[1–3] experiencing a greater level of distress than that associated with other prevalent cancers, possibly because of the poor prognosis of lung cancer.[4]

Historically, long delays between diagnosis and treatment have lessened the potential for a cure and reduced survival rates.[5] Despite improvements in these areas, and the development of novel oncology and surgical treatments, 5-year survival rates range from between 57 and 67% for patients with stage I non-small-cell lung cancer (NSCLC) to <1% for those with stage IV disease.[6,7,102]

Patients with lung cancer can experience feelings of isolation and uncertainty about where to get support and advice after completion of cancer treatment,[8] and healthcare workers may experience difficulties when trying to talk to dying patients.[103]

However, patients' experiences of their illness are not usually individual, socially isolated phenomena. Spouses, partners, family members and close friends may also participate in shaping patients' experiences, which, in turn, can affect their own lives.[9] Individuals seeking support from their families can change relationships within families and affect the needs of individuals involved.[10] Indeed, home-based support networks have been described as important for many of these patients, resulting in an increased recognition of the importance of informal caregivers, both as critical support providers and as people who have psychosocial needs of their own arising from their 'carer' status.[8,11,104–106]

Physicians and their medical teams share a patient's journey throughout the entire illness trajectory, from diagnosis through curative and palliative treatment. How physicians communicate with patients with cancer along the journey can have a significant impact on a patient's quality of life and health outcomes.[12] Effective communication between patient and physician, including transparency about treatment options and outcomes, has been shown to be important and it needs to seriously take into consideration the views and preferences of patients, families, friends and caregivers (FFCs).[104] Family situation, social support and life experiences of illness clearly vary and can have a big impact on how patients receive a diagnosis and how they subsequently manage their illness.[13]

There remains a continuing need to understand the views of patients, FFCs and physicians. With greater understanding comes the opportunity and possibility to make cumulative improvements to the quality of care for patients. This article reports responses to questions on key topics about lung cancer, captured through an internet-based data-gathering platform.

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