Table 3 Examples of item revisions made based on participants’ feedback on comprehensibility, relevance and exhaustiveness
N° | Original item | Type of problem | Illustrative quotes | Notes | Changes made (revised, deleted, added items) |
|---|---|---|---|---|---|
Item comprehensibility | |||||
1 | [FML7] …Provide the names of the various prescribers who prescribed the medicines you manage | Problems with wording | “Sometimes it [MED-fLAG] is made up of big words and I don’t know what to make of it, I don’t understand that (prescribers and interaction) [Home-dwelling older adult 11] | While patients mostly refer to “doctors”, healthcare professionals were proposed to be more inclusive concerning other professionals authorized by law to prescribe medications. The item was made more precise | [FML7] …Give the names of the different doctors or other health professionals who prescribed the medicines you manage |
2 | [FML20] …Say whether any of the medicines you manage may cause problems of interaction with other medicines [FML21]…Say whether any of the medicines you manage may interact with food and drink | Problems with wording | “The medications to avoid (…) prohibited food or drinks” [Home-dwelling older adult 6] | The term "interaction" was identified by participants as a linguistic expression attributed to medical jargon. Items were reworded | [FML20] …Say whether certain medicines are incompatible with those you are managing [FML21] …Say whether certain foods or drinks should be avoided or are prohibited with the medicines you are managing (alcohol, grapefruit, juice, lactose-based food etc.) |
3 | [FML18] …Describe the negative effects that could occur, even when medicines are taken correctly | Ambiguous/equivocal interpretation | "Difficult to answer (…) I didn't feel any positive or negative effect (example about a medicine). I think it's difficult to describe the positive effects" [Home-dwelling older adult 1] "A medicine that is prescribed by a doctor must be discussed, what it is used for and the side effects" [Informal caregiver 1] | The term “negative effects” was found to be unclear. The term “side effects” appeared to be potentially more appropriate. The item was reworded | [FML18] …List the main side effects of medicines, i.e., effects that are not intended but may occur (headaches, nausea, diarrhoea, dizziness, etc.) |
4 | [IML23] …Ask questions about medicines [IML24] …Ask questions about changes to the current list of medicines | (Other: redundancy) | “I don't see the difference [between the items]” [Physician 2] | Conceptual overlap of statements in a few items. Items were clustered together and refined by using examples derived from participants’ dialogue | [IML23] …Ask healthcare professionals for additional information about the medicines you are managing (precautions, risks and benefits, changes to the current list of medicines, etc.) |
Item relevance | |||||
5 | [CML54] …Identify lifestyle habits (physical activity, diet) that could have a beneficial influence on the health situation and the list of current medications | Doubtful relevance/appropriateness | “Seems to concern healthy lifestyle not medication” [Physician 1] | Seems to approach a different concept. The item was deleted | (Suppression of item) |
6 | [IML36] …Express your level of satisfaction with the information you received about medicines | Doubtful relevance/appropriateness | “This item concerns satisfaction with care rather than skills towards medication management” [Physician 1] | Seems to approach a different concept. The item was deleted | (Suppression of item) |
7 | [FML1] …Name all the medicines you manage, both prescription and non-prescription medication | Doubtful relevance/appropriateness | “Well at the moment…I have got seven or eight medicines to take every day and now I’ve got to take this one [new medicine]…I can't remember these names, I wrote it all down” [Home-dwelling older adult 5] | Some items imposed too high level of skill requirements for older patients and informal caregivers. Worded as is, this item implicitly means that the names of medication should be known by heart. This was found to be hardly achievable for polymedicated people (≥ 5 medications). Thus, participants thought that referring to a list was appropriate | [FML1] …Name both prescription and non-prescription medicines you are managing (either by heart or by using a list) |
8 | [FML18] …Describe the negative effects that could occur, even when medicines are taken correctly | Doubtful relevance/appropriateness | “I think that the hardest thing for any patient is trying to recognize it [side effect]…the doctor can’t expect to know what it is, unless he tells you… I’ve never had anyone coming back to me and explain the side effects” [Home-dwelling older adult and informal caregiver 4] | When they occur, side effects of medication could be difficult to discriminate from the symptoms related to the underlying disease. Nevertheless, home-dwelling older adults and informal caregivers mentioned that they wished to have more information concerning the “major” and “more important” side effects of their medication. Precision about “the main side effect” was added | [FML18] …List the main side effects of medicines, i.e., effects that are not intended but may occur (headaches, nausea, diarrhoea, dizziness, etc.) |
9 | [CML2] …Describe medicines by their appearance (colour and shape) | Doubtful relevance/appropriateness | “When I prepare my pillbox for the week, I take a look before closing each box and it's important for me to know the shape [of the medications]. Let's say one goes off [lost], it's interesting to know it by colour and shape it has” [Home-dwelling older adult 11] | For home-dwelling older adults, having an idea of medication appearance is a manner of checking medications before taking them, or to identify a medication that was dropped on the floor. However, to healthcare professionals, taken alone, this skill would not be a sufficient to ensure safe medication use. As this item was evidenced to be congruent with home-dwelling older adults’ experience, it was maintained | (Maintained as is) |
Item exhaustiveness | |||||
10 | (None) | Additional items | “I had to find solutions by myself (…) I have a medication plan on my smartphone” [Home-dwelling older adult 1] “I have a medication plan on me, it is with the driving licence (…) I also prepare my medication for the week (pillbox prepared without the help of a healthcare professional” [Home-dwelling older adult 12] | Home-dwelling older adults and informal caregivers shared their experience about practical means and strategies that they use to facilitate integration of medication taking into their daily life, such as lists, notes, reminders, electronic devices. Narratives were used to create new items | [CML41] …Keep a list of the medicines you are managing (in your wallet, on your phone) [CML42] …Use a treatment plan that describes when and how each medication should be taken [CML44] …Use a pillbox that you prepare yourself for several days (without the help of a health professional) |
11 | (None) | Additional items | “My wife had cancer. At the beginning I spent time looking for information [medication-related] and organized things but now only after the list of medicines has changed” [Informal caregiver 1] | Home-dwelling older adults and informal caregivers shed light on challenges occurring along the continuum of care, notably with respect to medication changes, and the way they handle them. Proactive behaviours, focusing on seeking help and adjustments of their strategies and routines, were translated into new items | [CML52] …Adapt your daily routines after the list of medicines has changed (e.g., after hospitalization) [CML51] …Organize the storage of medicines, know when to go to the pharmacy after a prescription change |
12 | (None) | Additional items | “It can be difficult to open medication blisters and packaging” [Pharmacist 4] | Since medication literacy is confined to cognitive and social skills (i.e., not physical capabilities), difficulties in opening medication blisters and packaging were not added to MED-fLAG. Nevertheless, the capacity for individuals to cope with medication-related problems, including practical ones, is an important aspect of critical medication literacy | [CML54] …Get help from your family or people around you if you have difficulties with medications [CML55] …Get help from health professionals if you have problems with medications |
13 | (None) | Ambiguous/equivocal interpretation | “Herbal remedies that I take are not on my list [self-made list]” [Home-dwelling older adult 5] “The importance of safe practice with complementary medicine, for example, St. John's wort treatment with oral anticoagulant” [Pharmacist 2] | The term “medication” frequently cited across items appeared to be understood by home-dwelling older adults and informal caregivers as “prescribed medications”. Nevertheless, healthcare professionals underlined the importance of safe practice in using natural products. Items were created in order to raise awareness that natural products are not without risk | [FML2] …Name the natural products you manage, such as herbal treatments, homeopathy, food supplements (by heart or list) [IML24] …Ask healthcare professionals for advice about natural products, e.g., herbal remedies, homeopathy and food supplements |
14 | [CML44] …use a pillbox that you prepare yourself for several days, without the help of a health professional [FML2] …list the names of the natural remedies you manage, e.g. herbal treatments, homeopathy, dietary supplements (by heart or with a support such as a prescription list) | (Other: unsatisfactory response options) | “May be relevant [item] but not applicable to all” [Physician 1] | An additional response option was added because certain activities or actions are less common, i.e., would not be experienced by all MED-fLAG respondents | Response option added: Not applicable to my situation |