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ALK+ UK highlights impact of health information gaps

PIF member shares results of lung cancer patient survey.

ALK Positive Lung Cancer UK has shared the findings of a survey which has highlighted how information gaps affect people living with ALK-positive lung cancer. Lung Cancer Europe has just published its 9th report with the support of ALK+ UK, focusing on knowledge and decision-making among people impacted by ALK-positive lung cancer in the UK. The report includes results from an online survey, with the following findings shared by ALK+ UK on LinkedIn: 

  • 1 in 5 said they did not get enough information about their diagnosis or treatment.
  • 1 in 4 struggled to understand the information they were given.
  • More than 1 in 2 said the information was too complex to support decision-making.
  • 3 out of 4 reported missing some form of information or support during their care journey.

ALK+ UK added: "When you’re facing complex decisions – targeted therapies, brain mets, clinical trials, side effects – you need clear, trusted, mutation-specific information to make fully informed choices. That’s why ALK+ UK holds the Patient Information Forum (PIF) TICK – the UK’s trusted quality mark for health information."

The Lung Cancer Europe report concludes with two calls for action from healthcare professionals. That they should offer complete, clear and comprehensive information about the disease and the treatment and supportive services available based on an individual's preferences and needs. They should also develop and implement a communication strategy to encourage and support shared decision-making.

Read the full report and survey findings on the Lung Cancer Europe website here.

Find out more about ALK+ UK here.

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