Shared decision-making and detection of comorbidities in an online acromegaly consultation with and without the Acromegaly Disease Activity Tool ACRODAT® using the simulated person approach.

OBJECTIVE: A patient-centered approach to the management of acromegaly includes disease activity control, shared decision-making and identification of comorbidities. The Acromegaly Disease Activity Tool (ACRODAT®) is intended to assist physicians in providing such holistic management. The present study investigated this claim using the simulated person (SP) approach. METHODS: We studied patient-doctor interaction via online video consultation in a randomized prospective study design with SPs trained to simulate a specific acromegaly profile. We analyzed the proportion of conversation time devoted to health content and the specific acromegaly and comorbidity relevant categories mentioned in the conversation. We collected physicians' feedback on the usefulness of ACRODAT®, SPs subjective perception of the quality of the conversation and compared consultations with and without ACRODAT® using a qualitative approach. RESULTS: The sample (N = 30) consisted of endocrinologists treating patients with acromegaly in Germany. For SP-physician interactions (N = 60), the proportion of time spent on conversation content (e.g. IGF-I, quality of life) was distributed according to the focus of the patient profile. Comorbidities were less well identified than the need for a change in therapy. Only 18.3% of the SPs were actively asked to participate in the decision-making process. ACRODAT® did not lead to any significant differences in the course of the discussion. CONCLUSIONS: Shared decision-making was underrepresented in this SP-physician interaction in acromegaly management. Physicians adapted the content of the discussion to the SP's needs, but did not adequately address comorbidities. According to the analysis criteria used, ACRODAT® did not contribute to a more holistic patient management in the present study.

Questionnaire and tools: clinical powerful instrument in acromegaly diagnosis and management.

PURPOSE: Acromegaly is a rare chronic disease characterized by systemic comorbidity and reduced quality of life. Although achieving biochemical control has always been the primary goal of acromegaly therapy, recent evidence has shown that the traditional assessment does not adequately capture the complexity of symptoms and patients' perception. These findings result in the need to improve a fast decision-making process of the clinician, who should not only take into account biochemical-instrumental criteria, but also patients' symptoms. With the aim of supporting the clinician in the diagnostic and therapeutic decision-making process several disease-specific tools have been developed. The aim of this review is to provide a description of the acromegaly-specific tools, presenting their main features, their application in daily practice, and their efficacy and utility. METHODS: A systematic search of Medline/PubMed, ISI-Web of Knowledge, and Google Scholar databases was done. RESULTS: Specific instruments and questionnaires have recently been developed to assist clinicians in the assessment of acromegaly. These are either Patient-Reported Outcome tools, such as Acromegaly Quality of Life Questionnaire (AcroQoL) and Pain Assessment Acromegaly Symptom Questionnaire (PASQ), or Clinician-Reported Outcome tools, such as ACROSCORE, SAGIT® and Acromegaly Disease Activity Tool (ACRODAT®). Such tools are extremely flexible and, therefore, have been widely adopted by endocrinologists and other professionals, so much so that they have also been included as recommendations in the 2018 international guidelines. CONCLUSION: Questionnaires and tools are useful in the management of acromegaly patients. They help clinicians evaluate patients' symptoms and could assist in the evaluation of disease activity.

Development of ACRODAT®, a new software medical device to assess disease activity in patients with acromegaly.

PURPOSE: Despite availability of multimodal treatment options for acromegaly, achievement of long-term disease control is suboptimal in a significant number of patients. Furthermore, disease control as defined by biochemical normalization may not always show concordance with disease-related symptoms or patient's perceived quality of life. We developed and validated a tool to measure disease activity in acromegaly to support decision-making in clinical practice. METHODS: An international expert panel (n = 10) convened to define the most critical indicators of disease activity. Patient scenarios were constructed based on these chosen parameters. Subsequently, a panel of 21 renowned endocrinologists at pituitary centers (Europe and Canada) categorized each scenario as stable, mild, or significant disease activity in an online validation study. RESULTS: From expert opinion, five parameters emerged as the best overall indicators to evaluate disease activity: insulin-like growth factor I (IGF-I) level, tumor status, presence of comorbidities (cardiovascular disease, diabetes, sleep apnea), symptoms, and health-related quality of life. In the validation study, IGF-I and tumor status became the predominant parameters selected for classification of patients with moderate or severe disease activity. If IGF-I level was ≤1.2x upper limit of normal and tumor size not significantly increased, the remaining three parameters contributed to the decision in a compensatory manner. CONCLUSION: The validation study underlined IGF-I and tumor status for routine clinical decision-making, whereas patient-oriented outcome measures received less medical attention. An Acromegaly Disease Activity Tool (ACRODAT) is in development that might assist clinicians towards a more holistic approach to patient management in acromegaly.

Acromegaly disease activity according to ACRODAT®, a cross-sectional study in Spain: ACROVAL study.

OBJECTIVES: To evaluate disease activity status using the Acromegaly Disease Activity Tool (ACRODAT®) in a cohort of Spanish acromegaly patients, to assess the relationship between the level of disease activity according to both ACRODAT® and the physicians' clinical evaluation, and to study the potential discrepancies in the perception of symptoms between physicians and patients. DESIGN: Multicenter, observational, descriptive and cross-sectional study. METHODS: Disease activity was assessed in adult patients with acromegaly under pharmacological treatment during at least 6 months using ACRODAT®. RESULTS: According to ACRODAT®, 48.2%, 31.8% and 20.0% of a total of 111 patients were classified as having a stable disease (S), mild disease activity (M-DA) and significant disease activity (S-DA) respectively. ACRODAT® classification of disease activity significantly correlated with physicians' opinion, with a moderate inter-rater agreement and a specificity of 92.45% (PPV = 86.21%). No correlation was found between IGF-I levels and severity of symptoms or quality of life (QoL). A decision to take clinical action was significantly more frequent in S-DA and M-DA patients than S patients but no action was taken on 5 (22.7%) and 27 (77.1%) S-DA and M-DA patients, respectively CONCLUSIONS: ACRODAT® detected disease activity in 51.8% of patients. Interestingly, although M-DA and S-DA patients were likely to be in the process of being controlled, action was not always taken on these patients. ACRODAT® is a validated and highly specific tool that may be useful to routinely monitor acromegaly and to identify patients with non-obvious disease activity by incorporating "patient-centred" parameters like symptoms and QoL to the clinical evaluation of acromegaly.