Communication practices and awareness of resources for acromegaly patients among endocrinologists

Abstract

Purpose: This study was designed to assess the awareness and utilization of resources to improve patients' treatment experiences among endocrinologists who currently treat patients with acromegaly.

Methods: A total of 4,280 US endocrinologists were randomly selected from the CMS National Plan and Provider Enumeration System and were invited by mail to participate in a 20-minute online survey. In order to qualify, respondents had to be the primary physician making treatment decisions for at least one patient for their acromegaly.

Results: Results are based on responses from 126 physicians from primarily urban and suburban practices, with a median of five acromegaly patients. A total of 70% of patients are currently receiving drug therapy; among these, 91% are on octreotide (51%), lanreotide (29%), or pasireotide (11%), alone or in combination with another therapy. Nearly half of the respondents thought that the impact of patient adherence on therapy outcome for acromegaly was either not very (40%) or not at all (7%) significant. Respondents who believe patient adherence significantly impacts treatment outcome were significantly more likely to discuss automated adherence reminders (50% vs 26%; P=0.015), mobile administration programs (57% vs 35%; P=0.029), and symptom tracking (72% vs 42%; P=0.002). Overall, 44% of respondents routinely recommend education/emotional support programs, and 25% routinely recommend financial assistance programs. Respondents who believe patient adherence significantly impacts treatment outcome generally were more familiar with individual education and emotional support programs compared to those who do not, although they were not more likely to routinely refer patients to any of these resources.

Conclusion: There are unmet needs with respect to increasing awareness among physicians of the importance of patient adherence to therapy, resources available to patients, and how collaboration among patients, nurses, and physicians can improve adherence and overall treatment experiences.

Keywords: emotional support programs; financial support programs; referrals.

Figure 1

(A) Percentage of patients receiving pharmacotherapy for acromegaly; (B) percentage of patients receiving combination therapies. Note: *Other refers to any agent(s) other than a somatostatin analog (eg, pegvisomant and cabergoline).

Figure 2

Frequency of speaking with nurses and discussion of support structure. Notes: No difference between physicians who do and do not believe that patient adherence significantly impacts treatment outcome in terms of the proportion of patients who speak with a nurse the same day they are diagnosed (t[124] =1.208, P=0.229) and no difference in terms of the proportion of patients with whom they discussed support structure (t[124] =0.556, P=0.480).

Figure 3

(A) Overall referrals for patient education resources; (B) awareness of and referrals to patient education resources. Notes: No significant difference between respondents who do and do not believe patient adherence significantly impacts treatment outcome in the proportion who routinely refers patients to at least one program, the proportion familiar with at least one program, and the proportion being familiar with any program, X² (2, N=126) =0.654, P=0.721. *Significant overall difference (chi-square P=0.015) between B and C; significant pairwise differences (P<0.05) for “familiar with, but do not routinely refer” and for “not familiar with.” ^#Significant overall difference (chi-square P=0.012) between B and C; significant pairwise differences (P<0.05) for “familiar with, but do not routinely refer” and for “not familiar with.” ^‡Others: additional support groups and educational resources may be found through the endocrine societies of individual countries/regions. Acromegaly Info (www.acromegalyinfo.com); Hormone Health Network (www.hormone.org); Pituitary Disorders (www.pituitarydisorder.net); Pituitary Foundation (www.pituitary.org.uk); Pituitary Society (www.pituitarysociety.org); You and Your Hormones (http://www.yourhormones.info); Pituitary Network Association (www.pituitary.org); Acromegaly Community (www.acromegalycommunity.com).

Figure 4

(A) Overall referrals for patient financial resources; (B) awareness of and referrals to patient financial resources. Notes: No significant difference between respondents who do and do not believe patient adherence significantly impacts treatment outcome in the proportion who routinely refer patients to at least one program, the proportion familiar with at least one program (though not routinely referring patients to any), and the proportion being familiar with any program, X² (2, N=126) =0.214, P=0.898. *Others: additional financial information found through the endocrine societies of individual countries/regions. ^#Significant overall difference (chi-square P=0.004) between B and C; significant pairwise differences (P<0.05) for “familiar with, but do not routinely refer” and for “not familiar with.” Financial assistance for lanreotide (http://acromegaly.somatulinedepot.com/resources/copay-savings-programs); Financial assistance for octreotide and pasireotide (1-877-LAR-IN FO, peak Pituitary Education, Access, and Knowledge, www.endocrineaccessnow.com).