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For acromegaly patients on injectable somatostatin receptor ligands (SRLs), treatment-related symptoms and side effects can impair quality of life.1,2 Yet some hesitate to share this information with their physicians.3

All study patients were bothered by the amount of time they continued to experience acromegaly symptoms despite treatment.5

PATIENTS on injectable SRLs COMMONLY REPORT INJECTION SITE REACTIONS.1,4,5

WHAT did patients report?

What % of patients reported SRL injection site pain for several days after the injection?

49%

Approximately half continued to experience pain at the injection site for days.5

Lasting pain and other injection site reactions were typical in patients on a stable injectable SRL dose for ≥12 months (Geer et al).5

Image table displaying injection site reaction data. Frequency and severity of injection site reactions including pain, bruising, swelling, nodules, and scar tissue. Moderate or severe pain persisted for hours or days. Study utilized online survey and Acro-TSQ to assess patient-reported outcomes among adults treated with SRLs. Image table displaying injection site reaction data. Frequency and severity of injection site reactions including pain, bruising, swelling, nodules, and scar tissue. Moderate or severe pain persisted for hours or days. Study utilized online survey and Acro-TSQ to assess patient-reported outcomes among adults treated with SRLs. Image table displaying injection site reaction data. Frequency and severity of injection site reactions including pain, bruising, swelling, nodules, and scar tissue. Moderate or severe pain persisted for hours or days. Study utilized online survey and Acro-TSQ to assess patient-reported outcomes among adults treated with SRLs. magnifying glass icon

Moderate or severe injection site pain persisted for hours or days

A cross-sectional, US-based study utilized an online survey and the Acro-TSQ to assess patient-reported outcomes among adults treated with injectable SRLs.

View Study
View Study

The Acromegaly Treatment Satisfaction Questionnaire (Acro-TSQ) follows FDA recommendations detailed in an official document guiding PRO development, which included qualitative research with individuals diagnosed with acromegaly.5

In an analysis of burdens associated with injectable SRLs (Fleseriu et al)1:

77%

of patients experienced injection site reactions

57%

of those patients reported that injection site reactions interfered with daily life
play Erin video

“It can’t be touched. The [injection] area, if it’s touched, it is extremely tender—exquisitely tender.” -Erin

Poor agreement on injection site reaction severity was observed in a study analyzing concordance between patients and their physicians (Geer et al).4

Table displaying frequency and severity of injection site reactions reported by medical providers and patients in a study analyzing concordance. Medical providers reported fewer reactions and often underestimated their severity. Study utilized online survey and Acro-TSQ to compare patient-reported outcomes with medical provider data. Table displaying frequency and severity of injection site reactions reported by medical providers and patients in a study analyzing concordance. Medical providers reported fewer reactions and often underestimated their severity. Study utilized online survey and Acro-TSQ to compare patient-reported outcomes with medical provider data. magnifying glass icon

Medical providers reported fewer injection site reactions than patients, and in many cases, were unaware of the severity of the reactions

A cross-sectional, US-based study utilized an online survey and the Acro-TSQ to collect patient-reported outcomes; these data were compared with data from interviews with patients’ medical providers to examine concordance.

View Study
View Study

The Acromegaly Treatment Satisfaction Questionnaire (Acro-TSQ) follows FDA recommendations detailed in an official document guiding PRO development, which included qualitative research with individuals diagnosed with acromegaly.5

The majority of patients reported GI side effects related to SRL injection cycles.1,5

WHAT did patients report?

What % of patients reported that GI side effects interfered with daily activities?

65%

The majority of patients reported that GI side effects interfered with their daily activities.1

GI side effects impacted daily life in an analysis of burdens associated with injectable SRLs (Fleseriu et al).1

Image table illustrating the impact of GI side effects on daily life from Fleseriu et al study. Analysis shows interference with daily, leisure, and work activities due to GI side effects associated with injectable SRLs. Data collected during the screening phase of a global study on acromegaly treatments utilizing the Acro-TSQ to assess burdens. Image table illustrating the impact of GI side effects on daily life from Fleseriu et al study. Analysis shows interference with daily, leisure, and work activities due to GI side effects associated with injectable SRLs. Data collected during the screening phase of a global study on acromegaly treatments utilizing the Acro-TSQ to assess burdens. magnifying glass icon

GI side effects interfered with daily activities, including leisure and work

Data collection during the screening phase of a global study on acromegaly treatments utilized the Acro-TSQ to analyze disease- and treatment-related burdens associated with injectable SRLs.

View Study
View Study

The Acromegaly Treatment Satisfaction Questionnaire (Acro-TSQ) follows FDA recommendations detailed in an official document guiding PRO development, which included qualitative research with individuals diagnosed with acromegaly.5

In patients on a stable injectable SRL dose for ≥12 months (Geer et al)5:

72%

experienced GI side effects post injection
Calendar graphic showing 10 days symbolizing GI side effects lasting a mean of 10 days post injection.
GI side effects lasted a mean (SD) of 10 (9.8) days post injection
play David video

“I have real bad nausea, just violent vomiting.” -David

breakthrough ACROMEGALY symptoms within SRL injection cycles are frequently reported.2,5

WHAT did patients report?

What % of patients reported symptoms worsening at the end of an SRL injection cycle?

79%

experienced breakthrough symptoms.2

Breakthrough symptoms occurred more frequently at injection cycle’s end in an assessment of disease burden, quality of life, and treatment satisfaction (Liu et al).2

Image table depicting the frequency of breakthrough symptoms at the end of injection cycles from Liu et al study. Symptoms worsen towards the cycle's end, with a majority reporting worsening in the week or days before the next injection. Analysis conducted as part of an assessment of disease burden, quality of life, and treatment satisfaction. Image table depicting the frequency of breakthrough symptoms at the end of injection cycles from Liu et al study. Symptoms worsen towards the cycle's end, with a majority reporting worsening in the week or days before the next injection. Analysis conducted as part of an assessment of disease burden, quality of life, and treatment satisfaction. magnifying glass icon

In an assessment of acromegaly disease burden, quality of life, and treatment satisfaction (Liu et al)2:

84%

had breakthrough symptoms that interfered with daily life and work
play Wendy video

“The breakthrough symptom that I feel is joint stiffness, especially in my hip flexors.” -Wendy

An additional study demonstrated that despite biochemical control, acromegaly symptoms occurred (Geer et al).5

Image table presenting symptom patterns in acromegaly patients with normalized IGF-1 levels from Geer et al study. Symptoms such as headache, fatigue, sweating, joint pain, and others occur right after, during, or at the end of injection cycles, despite biochemical control. Study conducted via online survey and Acro-TSQ to assess patient-reported outcomes among adults treated with injectable SRLs. Image table presenting symptom patterns in acromegaly patients with normalized IGF-1 levels from Geer et al study. Symptoms such as headache, fatigue, sweating, joint pain, and others occur right after, during, or at the end of injection cycles, despite biochemical control. Study conducted via online survey and Acro-TSQ to assess patient-reported outcomes among adults treated with injectable SRLs. Image table presenting symptom patterns in acromegaly patients with normalized IGF-1 levels from Geer et al study. Symptoms such as headache, fatigue, sweating, joint pain, and others occur right after, during, or at the end of injection cycles, despite biochemical control. Study conducted via online survey and Acro-TSQ to assess patient-reported outcomes among adults treated with injectable SRLs. magnifying glass icon

Many symptoms occurred constantly, while some occurred at the end of the injection cycle, despite biochemical control

A cross-sectional, US-based study utilized an online survey and the Acro-TSQ to assess patient-reported outcomes among adults treated with injectable SRLs.

View Study
View Study

The Acromegaly Treatment Satisfaction Questionnaire (Acro-TSQ) follows FDA recommendations detailed in an official document guiding PRO development, which included qualitative research with individuals diagnosed with acromegaly.5

patients on injectable SRLs reported experiencing emotional burdens.1

WHAT did patients report?

What % of patients reported injectable SRL treatment-related sadness?

53%

Over half experienced sadness related to treatment with injectable SRLs.1

In an analysis of burdens associated with injectable SRLs (Fleseriu et al)1:

64%

were upset by being dependent on others for treatment
play Ellen video

“So, my husband does my injection at home, and he feels guilty. He’s always worried that he’s hurting me.” -Ellen

In this study, many patients reported treatment-related sadness, treatment-related anxiety, and frustration with how they received treatment.1

Patients share their emotional reactions to injectable SRL treatment.a

Female patient with acromegaly glancing off into the distance
“We have to time it around travel…it’s this huge rigamarole that is stressful.” -Ellen
Female acromegaly patient looking defeated and upset
“I do prepare myself for the injection. It’s something that I absolutely dread.” -Wendy
Male patient with acromegaly glancing down in thought
“They tell guys not to cry. I guarantee you a guy that has acromegaly has cried.”
 -David

aActual acromegaly patient quotes and imagery.

Injectable SRL treatment is associated with additional ongoing challenges.1,6

Preparation/
Administration

Issues such as clogged or broken needles often necessitated a second shot6

LOST WORK DAYS

Patients reported a mean of 11 lost work days per year6

treatment inconvenience

76% were bothered by having to travel for injections1

The truth of the matter: patients report multiple burdens related to injectable SRL treatment.1,2,4-6

Gaining insights into patient challenges may help foster collaboration and increase patient satisfaction.3,a

Female acromegaly patient who has experienced preparation and administration challenges from injectable treatment

Preparation/
administration challenges

Female acromegaly patient who has experienced work loss due to acromegaly treatment

work
loss

Male acromegaly patient in despair who has experienced breakthrough symptoms

Breakthrough
symptoms

Female acromegaly patient sharing insights on the emotional distress she experienced getting injections

Emotional
distress

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“I’VE HAD A LOT OF MISHAPS…THE NEEDLE CLOGS SOMETIMES NO MATTER WHOSE HANDS IT’S IN.” -Ellen
“I was so extremely fatigued…I couldn’t do my job.” -Wendy
“Every 21 days or so, it’s a recurring monthly nightmare.” -David
“I DREADED GETTING THIS INJECTION…THE PAIN THAT WAS ACUTE, THE SORENESS I WOULD HAVE FOR DAYS.” -Erin
–
“I HAD TERRIBLE SCAR TISSUE DEVELOPMENT THAT HAPPENED. AND SO IT WAS EXTREMELY PAINFUL TO GET INJECTIONS.” -Erin
“I like to go out of town…but I have to be at home to get that injection.” -Wendy
“I have real bad nausea, violent vomiting for a couple of days after.” -David
“DRIVING TO AN INFUSION CENTER, HAVING A DIFFERENT NURSE EVERY TIME…WAS JUST SO STRESSFUL.” -Ellen
Upset female acromegaly patient experiencing injection site reactions from injectable treatment

Injection site
reactions

Frustrated female acromegaly patient explaining the treatment inconvenience of SRL injections

Treatment
inconvenience

Deflated male acromegaly patient who has experienced GI side effects from injectable treatment

GI side
effects

Solemn female with acromegaly explaining dependence on others

DEPENDENCE
ON OTHERS

Female acromegaly patient who has experienced preparation and administration challenges from injectable treatment

Preparation/
administration challenges

“I’VE HAD A LOT OF MISHAPS…THE NEEDLE CLOGS SOMETIMES NO MATTER WHOSE HANDS IT’S IN.” Ellen
Female acromegaly patient who has experienced work loss due to acromegaly treatment

work
loss

“I was so extremely fatigued…I couldn’t do my job.” Wendy
Male acromegaly patient in despair who has experienced breakthrough symptoms

Breakthrough
symptoms

“Every 21 days or so, it’s a recurring monthly nightmare.” David
Female acromegaly patient sharing insights on the emotional distress she experienced getting injections

Emotional
distress

“I DREADED GETTING THIS INJECTION…THE PAIN THAT WAS ACUTE, THE SORENESS I WOULD HAVE FOR DAYS.” Erin
Upset female acromegaly patient experiencing injection site reactions from injectable treatment

Injection site
reactions

“I HAD TERRIBLE SCAR TISSUE DEVELOPMENT THAT HAPPENED. AND SO IT WAS EXTREMELY PAINFUL TO GET INJECTIONS.” Erin
Frustrated female acromegaly patient explaining the treatment inconvenience of SRL injections

Treatment
inconvenience

“I like to go out of town…but I have to be at home to get that injection.” Wendy
Deflated male acromegaly patient who has experienced GI side effects from injectable treatment

GI side
effects

“I have real bad nausea, violent vomiting for a couple of days after.” David
Solemn female with acromegaly explaining dependence on others

DEPENDENCE
ON OTHERS

“DRIVING TO AN INFUSION CENTER, HAVING A DIFFERENT NURSE EVERY TIME…WAS JUST SO STRESSFUL.” Ellen
aActual acromegaly patient quotes and imagery.

Consider discussing the specific burdens your patients may be facing on injectable SRLs.

Register now for ongoing acromegaly clinical insights and important treatment updates.

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References

  1. Fleseriu M, Molitch M, Dreval A, et al. Disease and treatment-related burden in patients with acromegaly who are biochemically controlled on injectable somatostatin receptor ligands. Front Endocrinol (Lausanne). 2021;12:627711. doi:10.3389/fendo.2021.627711
  2. Liu S, Adelman DT, Xu Y, et al. Patient-centered assessment on disease burden, quality of life, and treatment satisfaction associated with acromegaly. J Investig Med. 2018;66(3):653–660. doi:10.1136/jim-2017-000570
  3. Gurel MH, Bruening PR, Rhodes C, Lomax KG. Patient perspectives on the impact of acromegaly: results from individual and group interviews. Patient Prefer Adherence. 2014;8:53-62. doi:10.2147/PPA.S56740
  4. Geer EB, Sisco J, Adelman DT, et al. Observed discordance between outcomes reported by acromegaly patients and their treating endocrinology medical provider. Pituitary. 2020;23(2):140-148. doi:10.1007/s11102-019-01013-2
  5. Geer EB, Sisco J, Adelman DT, et al. Patient reported outcome data from acromegaly patients treated with injectable somatostatin receptor ligands (SRLs) in routine clinical practice. BMC Endocr Disord. 2020;20(1):117. doi:10.1186/s12902-020-00595-4
  6. Strasburger CJ, Karavitaki N, Störmann S, et al. Patient-reported outcomes of parenteral somatostatin analogue injections in 195 patients with acromegaly. Eur J Endocrinol. 2016;174(3):355-362. doi:10.1530/EJE-15-1042