Communication practices and awareness of resources for acromegaly patients among endocrinologists

Figures & data

Table 1 Respondent demographics, practice information, and prescribing information

	Total respondents (n=126)
Gender, male/female	63%/37%
Years in practice, mean (SD)	17.3 (12.4)
Median (range)	15 (2–60)
Practice setting
Urban	49%
Suburban	48%
Rural	3%
Practice type
Group practice	50%
Solo private practice	22%
Hospital-based	17%
Clinic	9%
Academic affiliation, Y/N	33%/67%
Affiliation with pituitary center, Y/N	10%/90%
Current number of acromegaly patients (as primary physician)
Mean (SD)	11.3 (17.8)
Median (range)	5 (1–125)
Patients personally diagnosed in the past 2 years
Mean (SD)	3.3 (6.7)
Median (range)	2 (0–50)
Diagnosed ≥1 patient in past 2 years	75%
Patients referred after diagnosis by another physician
Mean (SD)	5.4 (12.8)
Median (range)	2 (0–90)
Had ≥1 patient referred	79%
Number of patients initiated on drug therapy in past 12 months
Mean (SD)	2.7 (4.2)
Median (range)	1 (0–25)
Physicians who have initiated ≥1 patient on drug therapy in the past 12 months	66%
Physicians who have ever initiated ≥1 patient on drug therapy	94%
Patients currently on pharmacologic therapy
Mean number of patients (SD)	7.8 (12.3)
Median (range)	4 (0–75)
Percentage of patients	70%

Abbreviations: N, no; SD, standard deviation; Y, yes.

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).

Table 2 Discussion of adherence support tools and programs

	Automated adherence remindersa			Mobile administration programb			Symptom trackingc
	Believes adherence significantly affects outcomes?			Believes adherence significantly affects outcomes?			Believes adherence significantly affects outcomes?
	Total (n=126)	Yes (n=66)	No (n=60)	Total (n=126)	Yes (n=66)	No (n=60)	Total (n=126)	Yes (n=66)	No (n=60)
Have a dedicated nurse who typically manages this, % Among those without a dedicated nurse	24 (n=96)	30 (n=46)	17 (n=50)	17 (n=104)	20 (n=53)	15 (n=51)	14 (n=108)	20 (n=53)	8 (n=55)
Patients with whom physician discusses this as an option, %	34	35	31	41	43	37 (P=0.024d)	46	44	51
Physicians who discuss this as an option with ≥1 patient, %	38	50	26 (P=0.015e)	46	57	35 (P=0.029e)	56	72	42 (P=0.002e)
Total (ie, assuming having a dedicated nurse means discussing topic with 100% of patients)
Patients with whom this is discussed as an option, %	48	49	46	53	51	57	54	52	59
Physicians who discuss this as an option with ≥1 patient, %	52	65	29 (P<0.01e)	56	65	35 (P<0.01e)	63	77	37 (P<0.01e)

Notes:

a Includes e-mails, phone calls, letters, and text messages.

b Health care providers deliver long-acting octreotide injections at home or a convenient location.

c Diary of symptoms, test results, and side effects.

d P-value from independent sample t-test.

e P-value from chi-square test.

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).