Investigators from Sweden interviewed 21 men (age average 66, range 46-83 years) with Dupuytren disease several weeks before surgery and again six to eight months later. The average number of previous treatments was one (range 0-15). Each phone interview was structured and lasted 20-45 minutes. The questions were asked in such a way as to stimulate a dialog. Information sought included
· Previous experiences and significance of illness and care
· Expectations regarding illness and health care
· Needs, both general human and specific medical
· Results of health outcome and quality of care
· Expectations regarding health and life
Based on previous work and each interviewee’s responses, the researchers classified each patient’s character as either tolerant or eager. A tolerant patient was one who would watch and wait to see events unfold and put his trust in the treatment team. Eager patients were ones who were interested in being involved in their care in some way.
Results: The investigators identified four categories of needs: for improved hand function, for knowledge, for support during treatment, need for participation in evaluation and improving care. The authors recognized that a patient’s life situation could contribute to the occurrence of needs but also be a resource for managing them.
Most relevant to hand therapists were the responses regarding need for support after surgery. The patients noted that the many issues of concern included splints, dressings, advancement of activities, and home exercise programs.
The eager patients typically prepared list of questions and contacted the surgeon or therapist if they needed further information. They also described themselves as being highly involved in shared decision-making. The tolerant patients thought that they should ask questions but waited for the provider to offer information. They did not actively take part in decision making but rather expected the care givers to make the right decisions.
Perhaps most importantly, both the tolerant and the eager character types said that they only followed instructions to a certain degree. They made their own decisions about medications, return to driving, wound care, and exercises based on whether the information provided to them made sense and was congruent with their own perceptions.
Discussion: The investigators noted that previous studies have indicated that a lack of information and a wish for more extensive follow-up are possible reasons for a negative view of outcome after surgery and therapy. They stress that communication between patients and medical professionals is as important as meeting their needs and that there is great value provided by support and follow-up by surgeon and/or therapist. The researchers acknowledged that their study included only men.
Comment: I like this article. Sure, a patient can have a great result from Dupuytren fascia excision when one of us examines their skin scars and joint motion, but the patient may not perceive the result as good if they felt abandoned during the healing process and had questions that went unanswered.
We intuitively know about the eager vs. tolerant patients, but we need to consciously provide a stream of information to both. Since many studies have shown that patients retain less than half of what we tell them, repetition is good, having a family member or friend present is good, and providing written information is good. This includes stressing information that we think is most important, which can be easily done by underlining or highlighting critical information in printed handouts.
Furthermore, recognize that the patients in this study indicated that they did not always follow instructions even when they were provided. So maybe we should ask patients to do their home exercises four times daily if we secretly hope that they will do them twice. And perhaps most importantly, be credible and thorough with the education process. Either the instructions have to conform to their intuition or we have to explain why the information we are providing may seem counterintuitive. Then the patients, according to this study, will have a positive attitude toward their encounter and sing our praises.