Patients’ Self-Awareness and Empowerment

By filling out an HRQoL questionnaire and communicating about the answers to the questions, patients may gain more insight into the impact of the skin disease on their own physical, psychological, and social functioning and well-being. Most likely, this insight will increase patients’ self-awareness; for instance, awareness of specific psychological problems and of specific health care needs. Such awareness, and the acknowledgment of needs by the dermatologist, may further empower patients to share and discuss their problems with significant others, such as a partner, relatives, and friends.

Patient-Centered Health Care

Clinical evaluations of the severity of a skin disease are not highly correlated with patients’ perceptions of HRQoL. Consequently, HRQoL assessment is of particular importance to enable the dermatologist to grasp the impact of the skin disease and/or its treatment on an individual patient. In addition, such data may highlight specific aspects of HRQoL that are affected the most, for instance shame or depression. In patients with a chronic skin disease, this information might be of relevance, particularly because of a relatively high prevalence of psychosocial problems, often hidden “under the skin.”

Furthermore, insight into these problems creates an opportunity to communicate in an empathic and responsive way, thereby supporting patients in coping with their problems more effectively. Communication about HRQoL may also be helpful in engaging patients in a discussion on treatment preferences to allow mutual or shared decision making.

An Optimal Choice of Treatment

HRQoL data, in addition to clinical information, contribute to a more comprehensive insight into a patient’s situation after diagnosis and before the choice for a specific treatment. By including HRQoL data into the decision-making process, the dermatologist and the patient can make an optimal, shared choice for a specific treatment in terms of its setting (eg, inpatient, outpatient, day care, specialty care), intensity or invasiveness, position in the conceivable order of treatments over time, and/or combinations with other treatments. For instance, if a patient experiences a high level of symptomatic burden, a more intensive or invasive treatment can be considered. A better-tailored treatment is expected to be better tolerated and adhered to by the patient. Additionally, feasible aims of a specific treatment can be discussed using HRQoL data; for instance, a reduction of itch, a decrease in or clearance of visible lesions, or a reduction in the degree of disease severity within a specific time frame.

Furthermore, patients’ needs for additional care, as a supplement to regular dermatologic care, can be identified and addressed. Some patients may experience low levels of HRQoL that cannot be explained by disease severity only. Other patients may have serious problems with respect to specific domains or aspects of HRQoL, such as suffering from depression, feeling socially isolated, or encountering problems at work. In such instances, referral to a social worker, a psychologist, or a psychiatrist might be indicated, and can result in a valuable adjuvant therapy.

Monitor Treatment over Time and Determine Treatment Effectiveness

HRQoL scores of a patient before treatment may be compared with scores at follow-up visits. In this way, the treatment process can be monitored over time. HRQoL data obtained at follow-up visits may also be helpful in checking negative consequences or side effects of treatments; for instance, an increase of itch, pain, irritation, tiredness, sleep, or depression. Such HRQoL data alert the dermatologist to adjust the treatment whenever necessary (eg, dose, switch treatment, combination with other treatment); moreover, this tailored treatment is expected to be better tolerated and adhered to by the patient.

In the end, after completion of treatment, HRQoL scores of a patient can be compared with scores before treatment. An improvement in HRQoL, which is a main treatment goal for many patients, can be monitored, and may indicate treatment effectiveness.

Improvement of Treatment Outcome

Although the aforementioned functions suggest that application of HRQoL primarily has a positive effect on the process of health care, a positive effect on the outcomes of dermatologic treatment itself is expected as well. Empowerment of the patient, patient-centered health care, an optimal choice for treatment, monitoring treatment over time, and the explicit attention to HRQoL and/or the patient’s point of view is likely to have a positive impact on the patient’s HRQoL, treatment satisfaction, and disease severity. As evidence suggests that clinical and psychological outcomes, such as adherence to treatment advice, are optimized when patients’ emotional concerns are addressed, it is critical to recognize and manage the psychological needs of patients.

Because of lack of evidence in dermatology concerning the aforementioned functions, a randomized controlled trial (Dutch Trial Register, NTR1364) was started to assess the efficacy of HRQoL assessment and HRQoL communication in dermatologic practice. The study is ongoing and we expect to publish the results in 2012.