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Changing preferences for information and participation in the last phase of life: a longitudinal study among newly diagnosed advanced lung cancer patients

(2012) SUPPORTIVE CARE IN CANCER. 20(10). p.2473-2482
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Organization
Abstract
The objective is to explore changes over time in the information and participation preferences of newly diagnosed stage IIIb/IV non-small-cell lung cancer patients. Patients were recruited by physicians in 13 hospitals and interviewed every 2 months until the fourth and every 4 months until the sixth interview. Sixty-seven patients were interviewed three times. Over a period of 4 months from diagnosis, half of patients changed their information preferences for palliative care and end-of-life decisions with a possible or certain life-shortening effect (ELDs, e.g., non-treatment decisions) in both directions, from not wanting to wanting the information, but also-and as much-from wanting to no longer wanting it. The latter were more likely to be in a better physical condition. Preferences for participation in medical decision making also changed: 50% to 78%, depending on the type of decision (general, treatment, transfer or ELD), changed their preference towards wanting more or less participation. Pain seemed to be a trigger for patients wanting more involvement, which contrasts with studies suggesting that patients who are more ill tend to give up more control. Doctors should regularly ask their advanced lung cancer patients how much information and participation they want because preferences do change in unexpected ways.
Keywords
end-of-life decisions, palliative care, information preferences, medical decision making, non-small-cell lung, patient participation, QUALITY-OF-LIFE, DECISION-MAKING, ILLNESS, END, COMMUNICATION, PERSPECTIVE, PACLITAXEL, ONCOLOGY, TRIAL, NEEDS

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Citation

Please use this url to cite or link to this publication:

MLA
Pardon, Koen et al. “Changing Preferences for Information and Participation in the Last Phase of Life: a Longitudinal Study Among Newly Diagnosed Advanced Lung Cancer Patients.” SUPPORTIVE CARE IN CANCER 20.10 (2012): 2473–2482. Print.
APA
Pardon, Koen, Deschepper, R., Vander Stichele, R., Bernheim, J., Mortier, F., Bossuyt, N., Schallier, D., et al. (2012). Changing preferences for information and participation in the last phase of life: a longitudinal study among newly diagnosed advanced lung cancer patients. SUPPORTIVE CARE IN CANCER, 20(10), 2473–2482.
Chicago author-date
Pardon, Koen, Reginald Deschepper, Robert Vander Stichele, Jan Bernheim, Freddy Mortier, Nathalie Bossuyt, D Schallier, et al. 2012. “Changing Preferences for Information and Participation in the Last Phase of Life: a Longitudinal Study Among Newly Diagnosed Advanced Lung Cancer Patients.” Supportive Care in Cancer 20 (10): 2473–2482.
Chicago author-date (all authors)
Pardon, Koen, Reginald Deschepper, Robert Vander Stichele, Jan Bernheim, Freddy Mortier, Nathalie Bossuyt, D Schallier, P Germonpré, D Galdermans, W Van Kerckhoven, and Luc Deliens. 2012. “Changing Preferences for Information and Participation in the Last Phase of Life: a Longitudinal Study Among Newly Diagnosed Advanced Lung Cancer Patients.” Supportive Care in Cancer 20 (10): 2473–2482.
Vancouver
1.
Pardon K, Deschepper R, Vander Stichele R, Bernheim J, Mortier F, Bossuyt N, et al. Changing preferences for information and participation in the last phase of life: a longitudinal study among newly diagnosed advanced lung cancer patients. SUPPORTIVE CARE IN CANCER. 2012;20(10):2473–82.
IEEE
[1]
K. Pardon et al., “Changing preferences for information and participation in the last phase of life: a longitudinal study among newly diagnosed advanced lung cancer patients,” SUPPORTIVE CARE IN CANCER, vol. 20, no. 10, pp. 2473–2482, 2012.
@article{1992312,
  abstract     = {The objective is to explore changes over time in the information and participation preferences of newly diagnosed stage IIIb/IV non-small-cell lung cancer patients. 
Patients were recruited by physicians in 13 hospitals and interviewed every 2 months until the fourth and every 4 months until the sixth interview. 
Sixty-seven patients were interviewed three times. Over a period of 4 months from diagnosis, half of patients changed their information preferences for palliative care and end-of-life decisions with a possible or certain life-shortening effect (ELDs, e.g., non-treatment decisions) in both directions, from not wanting to wanting the information, but also-and as much-from wanting to no longer wanting it. The latter were more likely to be in a better physical condition. Preferences for participation in medical decision making also changed: 50% to 78%, depending on the type of decision (general, treatment, transfer or ELD), changed their preference towards wanting more or less participation. Pain seemed to be a trigger for patients wanting more involvement, which contrasts with studies suggesting that patients who are more ill tend to give up more control. 
Doctors should regularly ask their advanced lung cancer patients how much information and participation they want because preferences do change in unexpected ways.},
  author       = {Pardon, Koen and Deschepper, Reginald and Vander Stichele, Robert and Bernheim, Jan and Mortier, Freddy and Bossuyt, Nathalie and Schallier, D and Germonpré, P and Galdermans, D and Van Kerckhoven, W and Deliens, Luc},
  issn         = {0941-4355},
  journal      = {SUPPORTIVE CARE IN CANCER},
  keywords     = {end-of-life decisions,palliative care,information preferences,medical decision making,non-small-cell lung,patient participation,QUALITY-OF-LIFE,DECISION-MAKING,ILLNESS,END,COMMUNICATION,PERSPECTIVE,PACLITAXEL,ONCOLOGY,TRIAL,NEEDS},
  language     = {eng},
  number       = {10},
  pages        = {2473--2482},
  title        = {Changing preferences for information and participation in the last phase of life: a longitudinal study among newly diagnosed advanced lung cancer patients},
  url          = {http://dx.doi.org/10.1007/s00520-011-1369-4},
  volume       = {20},
  year         = {2012},
}

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