Shared Decision Making Tools: Does a Paper Decision Aid Help?
Providing information is not the same as preparing someone to act.
Patient education is often treated as the last step of a visit. The clinician explains the options, hands over some information and hopes the patient knows what to do next.
Shared decision making tools work differently. A patient decision aid makes the decision explicit, sets out the options with their benefits and harms, and helps the patient say what matters to them. The largest review of these tools, 209 randomized trials, found they improve knowledge and leave fewer patients passive in the decision. A new psoriasis study adds a practical picture: a paper decision aid within a shared decision making program, and most patients reporting a decision by the end of the consultation.
A paper decision aid in the psoriasis consultation
Researchers in Taiwan built a shared decision making program for psoriasis (opens in a new tab) for adults with moderate to severe plaque psoriasis who were considering a biologic. A multidisciplinary team developed the program, and it included a paper patient decision aid.
In all, 72 patients completed a questionnaire after shared decision making. Asked about the time before the program, 4.2 percent said they had reached a treatment decision by the end of a consultation. After it, 86.1 percent said they had (p < 0.001). The share reporting elevated anxiety about the decision fell from 52.8 percent to 33.3 percent (p = 0.029).
Patients also scored their preparation for decision making at a mean of 78.4 out of 100. On CollaboRATE (opens in a new tab), a three item patient reported measure of shared decision making in the visit, the mean was 90.4 out of 100.
This was not an elaborate technology platform. It was a structured paper tool, used within a clinical conversation.
What this psoriasis study cannot show
The numbers are encouraging. They also need care.
Only 72 patients took part, in a single group, with no control group. They reported their decision status and anxiety before the program in the same questionnaire they completed afterward, so the before figures rest on memory. The study cannot show that the paper tool caused the change.
The paper calls its findings preliminary and hypothesis generating, and says prospective controlled studies are needed before causal conclusions. It is also an early accepted version, which may still be edited before the final version is published.
What the larger evidence on patient decision aids shows
The psoriasis study does not stand alone. A 2024 Cochrane review of patient decision aids (opens in a new tab) pooled 209 randomized trials with 107,698 participants, comparing decision aids with usual care across 71 different decisions.
With high certainty, decision aids improved knowledge by 11.9 points on a 100 point scale. They made risk perceptions more accurate and reduced the share of patients who were passive in the decision. They did not change decision regret. With moderate certainty, they probably helped more patients make choices that matched their own informed values.
Visit time is a fair question. When the aid was used during the consultation, visits ran 1.5 minutes longer in eight trials. When it was used before the visit, consultation length did not differ. The reviewers say more studies are needed on adherence and on downstream cost.
The review's main outcomes concern the quality of the decision: what patients knew, how they took part, and whether the choice fit their values. The psoriasis study asked a plainer question: did the patient leave with a decision?
Providing information is not the same as preparing someone to act
Patients facing a complex decision are often given more than they can take in during one visit. A biologic, for example, can bring unfamiliar terms, different risks and benefits, insurance requirements, monitoring and a long course of treatment.
Providing information is not the same as preparing someone to act.
A useful decision page answers five practical questions:
What decision am I being asked to make?
What are my reasonable options?
What matters most for my situation?
What should I do next?
When should I follow up?
The page does not replace the clinician. It gives the clinician and the patient one structure to work through the decision together. Once the choice is made, a written plan carries the next step home, such as a plan for psoriasis, for a biologic such as adalimumab, or for subcutaneous biologic injection training.
Readable patient education is not enough without actionable steps
Patient education is often judged by reading level alone. Readability matters, but it is not enough. A page can be easy to read and still fail to help a patient make a decision, finish a next step or recognize when follow up is needed.
Effective patient education is relatable, written from the patient's point of view. It is readable, in clear and familiar language. It is actionable, organized around decisions and next steps. And it is recognizable, delivered in a consistent format that patients learn to find their way around.
These are the four principles behind PENCIL Health, explained at more length as the four pillars.
The psoriasis study did not evaluate a PENCIL Care Plan. It does support the larger idea: written information becomes more valuable when it is structured, reviewed with the patient and tied to an immediate action.
Paper still has a place beside portals and apps
Healthcare innovation is increasingly tied to artificial intelligence, patient portals and mobile apps. These may improve access and personalization, but technology alone does not guarantee understanding.
A well designed page has its own advantages. It stays in the patient's hand after the visit. It can be read again at home, shared with family and brought to the next conversation.
The goal is not to choose between paper and technology. It is to give patients a clear plan in a form they can understand, revisit and use.
What a stronger study of a paper decision aid would measure
The psoriasis findings are a model for the next study, not a final answer. A stronger prospective study would measure understanding and anxiety before the visit, then provide the written tool during the consultation. It would then follow what happened next: treatment decisions, prescriptions filled, treatments started, follow up visits kept, clarification calls, and what patients recall several days later.
A shared decision should end in a written plan
Patients do not only need more information. They need information organized into a plan they can understand and carry forward.
A written care plan should not be an afterthought at the end of the visit. It should connect the clinical conversation to the patient's next decision, next action and next appointment.
That is how patient education begins to complete the care.
Let's Complete the Care.
