Article

What matters to me: An international online survey of people treating, affected by and living with lung cancer

Primary Medical Care Group, Primary Care & Population Science Unit, University of Southampton School of Medicine, Aldermoor Health Centre, Southampton, SO16 5ST, UK.
Future Oncology (Impact Factor: 2.48). 07/2012; 8(7):883-96. DOI: 10.2217/fon.12.65
Source: PubMed

ABSTRACT

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.
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.
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.
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.

0 Followers
 · 
23 Reads
  • [Show abstract] [Hide abstract]
    ABSTRACT: A diagnosis of cancer of any type is frightening, stressful, and potentially life-changing. Cancer can impact a person's physical, social, and emotional well-being. Therefore, cancer patients, their families, and caregivers need a broad range of resources. This article will review Internet resources for lung and esophageal cancers, including resources for all aspects of the cancer journey.
    No preview · Article · Jul 2013 · Journal of Consumer Health on the Internet
  • [Show abstract] [Hide abstract]
    ABSTRACT: Abstract Background: 'Patient experience' is both recognised and solicited as a means of assessing healthcare delivery and a method for gauging patient centredness. Research comparing healthcare recipient and provider perceptions regarding the same episode of care is lacking. Aim: To identify what mattered to a patient and family member (healthcare recipients) during the patient's hospital experience and to examine the healthcare provider's awareness of what mattered. Methods: A qualitative descriptive investigation was undertaken using semi-structured interviews designed to compare multiple perceptions of one patient's hospital experience. Interviews were undertaken with the patient, family member, and healthcare providers. A definition of hospital experience was sought from each participant. Additional phrases as presented by the patient and family member were coded and grouped into categories and then salient themes. Phrases as presented by the healthcare providers were coded, and then allocated to the previously identified themes. Findings: One patient, his wife and seven healthcare providers (doctors (2), registered nurses (4) and a patient care orderly (1)) were interviewed. Definitions of 'hospital experience' differ between participants. Recipients include pre and post hospital admission periods, whereas providers limit hospital experience to admission. Three salient themes emerged from recipient data suggesting; medication management, physical comfort and emotional security are what mattered to the recipients. Awareness was dependent upon theme and differed between the providers. Conclusion: Hospital experience as a term is poorly defined, and definitions differ between recipients and providers of care. Healthcare providers are not always aware of what matters to the patient and family during their hospital admission.
    No preview · Article · Nov 2014 · Value in Health
  • [Show abstract] [Hide abstract]
    ABSTRACT: This study reviews empirical studies in the area of illness perceptions in patients with non-small-cell lung cancer (NSCLC). Beliefs about the illness and its consequences, including its medical management, are part of the review. Also, the relatively small research area of perceptions and views about patients with NSCLC of caregivers and health care providers is reviewed. Given our earlier review of the topic in this Journal [5], we now report on papers published after that 2011 publication. 38 papers were identified, a quite major increase in published research compared to the 15 papers in our previous publication (2011 and earlier). Most papers report on psychosocial concepts that determine responses to the illness and its treatment. Increasingly, reactions of caregivers and health care providers are studied. These last two categories of respondents perceive the psychosocial consequences of NSCLC as more severe than the patients themselves. Psychosocial variables appear to be stronger predictors of psychological distress and reduced quality of life than sociodemographic or clinical variables. These results are instrumental in the developing field of psychosocial interventions for patients with non-small-cell lung cancer and their caregivers, which may also be helpful for health care providers. Suggestions for research and clinical implications are presented.
    No preview · Article · Nov 2015 · Lung cancer (Amsterdam, Netherlands)