Patients’ experience of lung cancer care coordination: a quantitative exploration

Abstract

Purpose

Improving the coordination of care for people with lung cancer is a health priority. This study aimed to tailor an existing care coordination survey for a lung cancer population, investigate coordination experiences for patients who had received hospital-based treatment and identify any factors that may be associated with poor care coordination.

Methods

We conducted a cross-sectional survey of lung patients within two tertiary hospitals in Sydney, Australia. The Cancer Care Coordination Questionnaire for Patients (CCCQ-P) is a psychometrically valid and reliable survey originally developed for colorectal cancer. We pilot tested a survey adaptation with lung cancer patients, support group members and medical specialists (n = 49). A revised survey was mailed to eligible patients via their medical specialist.

Results

Fifty-three of 118 eligible participants (45%) completed the CCCQ-P; most had early-stage disease and were about 70 years old. Overall, participants reported positive experiences of care coordination (mean total score 78.1), with high scores on communication and navigation subscales. The most problematic areas related to administrative aspects of care coordination and communication and information provision. Two patient groups (those residing in regional and rural areas, or no experience with the health system prior to diagnosis) reported significantly lower scores on the navigation subscale.

Conclusions

This study found that lung cancer patients’ experience of care coordination was positive, but highlighted the need for strategies to assist patients living in rural areas, and those with no experience of the health care system. The CCCQ-P survey instrument can be used in future lung cancer studies.

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Acknowledgments

We are very grateful to all project participants, particularly the patients who took part in the survey and members of the Lung Foundation Australia lung cancer support group. We wish to thank clinicians in the lung cancer multidisciplinary teams at the study hospitals who reviewed the survey instrument and contacted patients to participate. We acknowledge the input of the Lung Cancer Demonstration Project (LCDP) NSW Collaboration team members, including three consumer representatives. We also thank Barbara Daveson and David Salvestrin from Cancer Australia for supporting the NSW Collaboration of the LCDP.

Funding statement and independence of the researchers

This work was supported by Cancer Australia as part of the NSW Collaboration of the Lung Cancer Demonstration Project (LCDP). The LCDP is an initiative of Cancer Australia, funded by the Australian Government. The study funder, Cancer Australia, had no role in the study design; the collection, analysis, and interpretation of data; or in the decision to submit the article for publication.

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Affiliations

Authors

Contributions

This study was proposed by JY. GKC wrote the first draft of the manuscript and significant contributions were made by ID and NMR. Project management was overseen by NMR. GKC undertook all project coordination tasks, including ethics and governance approvals and data collection. Data analysis was undertaken by ID with advice from JY. DJB and PB are clinical leaders at the participating sites. All authors contributed to manuscript drafts and approved the final draft of the manuscript for submission.

Corresponding author

Correspondence to Nicole M. Rankin.

Ethics declarations

Competing interests

The authors declare that they have no competing interests.

Ethics

Ethics approval for this project was obtained from the Sydney Local Health District Human Research Ethics Committee (LNR/15/RPAH/508) and site-specific local governance approvals were granted prior to project commencement.

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Collett, G.K., Durcinoska, I., Rankin, N.M. et al. Patients’ experience of lung cancer care coordination: a quantitative exploration. Support Care Cancer 27, 485–493 (2019). https://doi.org/10.1007/s00520-018-4338-3

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Keywords

  • Lung neoplasms
  • Care coordination
  • Questionnaire
  • Australia
  • Navigation
  • Communication