The information needs of people with COPD-The holistic approach with special reference to gender and time since diagnosis.
Hannele Siltanen, Tiina Aine, Heini Huhtala and 2 others
PMID 33755324WHAT IT FOUND
People with COPD reported many unmet information needs about counselling, especially what to do when breathing worsens, when to call an ambulance, diet, palliative care, fatigue and daily life.
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Key findings
01Nearly half of respondents (42.5%) had not been told what to do when breathing worsened, and 83.6% had not been told when to call an ambulance.
02Over three-quarters wanted information about palliative care or social security, and an equal proportion wanted help recognising and self-managing fatigue, anxiety, depression or stress.
03LINQ total information needs did not differ by gender (women 9.64, men 9.21), and no significant differences were found by time since diagnosis.
STILL TO COME
How it was doneWhat they foundWhat it means for PTsWhat it means for OTsWhat it means for RNs
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What it does not show
Convenience sampling through a patient-organisation website, Facebook and one local event may not represent all people with COPD, especially those not using these channels. Diagnosis was self-reported and not confirmed by the researchers. Only 143 of 169 LINQ respondents had complete answers for total scores, and item-level responses varied because answering was voluntary. The LINQ total score had no validated cut-off for high information need, so the study could not classify how many people had high need. The complementary 33-item questionnaire was created for this study and only pretested with 13 volunteers whose answers were excluded, so it is not a validated holistic measure. The design was cross-sectional, so it describes reported needs at one time point and cannot show that counselling changes or patient outcomes.
Declared interests
The authors declared no conflict of interest. The study was funded by the Tampere Tuberculosis Foundation, Tampere, Finland.
The easy way to misread this
Do not read the high percentages as proof that giving more information improves COPD outcomes. This was a cross-sectional self-report survey of unmet information needs, with no tested intervention or patient outcome.