Table 3 Participants’ understanding of individual items and revisions to the SCCD based on CI feedback

Cough symptoms

Frequency of cough

Round 1: n = 9 (100%)

Round 2: n = 10 (100%)

Round 3: n = 10 (100%)

Described in terms of day-to-day variability and variation during the daytime versus the nighttime

None

Several participants found it difficult to remember the number of times they coughed in the past 24 h

Severity of cough

Round 1: n = 9 (100%)

Round 2: n = 10 (100%)

Round 3: n = 10 (100%)

Described in terms of how bad a participant’s cough experience was, noting that severe coughing can be “debilitating”

Based on participant feedback from Round 1, the item stem wording was changed from “bad” to “severe”

—

Coughing fits

Described as “episodes,” “fits,” “spells,” or “uncontrollable” or “constant” cough

Based on participant feedback from Round 1, the item stem was modified from frequency of “a coughing fit” to “coughing fits”

—

Urge to cough

Described as the need or want to cough and a “tickle” in the throat

None

—

Ability to control cough

Described as trying to suppress cough or attempts to lessen the frequency of cough and “calming it down”

Based on participant feedback from Round 1, the item stem was revised from the ability to “suppress cough” to “control cough” to reflect participant language

Participants indicated that their ability to control their cough was dependent on the severity and frequency of the cough

Symptoms related to cough

Pain due to cough

Described in terms of frequency and severity

Based on participant feedback from Round 2, the wording of this item stem and responses for pain were revised to better indicate severity

Some participants regarded the pain and discomfort items as repetitive and felt that they were similar concepts, while others felt it was important to ask about both concepts, noting that it is possible to experience discomfort without pain

Physical discomfort due to cough

Described in terms of frequency and severity

Based on participant feedback from Round 2, the wording of this item stem and responses for discomfort were revised to better indicate severity

Breathlessness due to cough

Described in terms of an inability to complete daily tasks due to difficulty catching breath

None

—

Leaking urine due to cough

Described as involuntarily “wetting yourself” or “passing urine” when coughing

None

A male participant mentioned that this item was less relevant to men and probably more applicable to women

Disruption to activities due to cough

Disruptions to usual household activities

Described as doing laundry, cleaning the house, or gardening

After Round 1, this item stem wording was changed from “usual activities” to “usual household activities” for clarity and differentiation from the new separate item about disruptions to strenuous activities

—

Disruptions to strenuous physical activities

Described as exercise and housework requiring more physical effort

None

—

Disruptions to social interaction

Described as meeting and speaking to other people

None

—

Disruption to sleep due to cough

Difficulty staying awake during the day due to coughing the night before

Described as “drifting off,” “feeling drowsy,” and “not feeling refreshed”

Given the difficulty experienced by some participants in attributing tiredness during the day to coughing at night, the item stem was reworded for Round 3 to ensure attribution was made to cough. The item was deleted from Version 1.0 of the SCCD as the instrument development team found the concept could be influenced by factors such as comorbid conditions (e.g., obstructive sleep apnea) and would also be inappropriate for night workers or people who sleep during the day

Participants mentioned that it was difficult to know the reason they had had disturbed sleep. One participant responded to the item based on their difficulty sleeping at night, rather than their difficulty staying awake during the day, and another participant suggested deleting the item as it was a bit lengthy and complicated

Difficulty falling asleep

Described as not being able to go to sleep due to coughing and taking longer to fall asleep

After Round 1 this item stem wording was modified from “trouble” to “difficulty” in order to emphasize how participants viewed the concept

—

Disturbance of sleep

Described as interrupted sleep, poor sleep quality, or being woken up due to coughing

None

Wording revisions were made by the translatability team

Waking up from sleep

Participants described times when they woke up at night coughing

Participants’ feedback indicated that this concept was captured by “sleep disturbed by cough” and a decision was made by the instrument development team to delete the item from Version 1.0 of the SCCD due to redundancy

Participants preferred the item on sleep disturbance as it was more descriptive of their experience