Acromegaly and the information gap: patient perceptions of the journey from primary to tertiary care

Pak, Hei Yi Vivian; Lansdown, Andrew; Taylor, Peter; Rees, Dafydd Aled; Davies, John Stephen; Hayhurst, Caroline

doi:10.1530/ec-20-0335

Cited by 3 publications

(2 citation statements)

References 24 publications

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“…Shared decisions increase patient adherence to treatment and, therefore, effectivity [ 46 ]. Patients are informed or willing to be informed, and are aware and eager to take control of their disease and their treatment [ 47 ]. However, their opinion is usually disregarded.…”

Section: Discussionmentioning

confidence: 99%

Preference of acromegaly patients for treatment attributes in Spain

et al. 2023

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Objective Acromegaly is a rare disease caused by increased growth hormone secretion and a subsequent increase in insulin-like growth factor I (IGF-I) levels. Patients display multiple comorbidities that affect their quality of life (QoL). Treatment aims to maintain good biochemical control, tumour control and reduce the risk of comorbidities; however, their impact on QoL has been overlooked until recently. We interviewed patients to explore their preferences with regard to treatment attributes. Design A cross-sectional study based on interviews and a discrete choice experiment (DCE) in a Spanish cohort. Methods Adult patients diagnosed with acromegaly ≥1 year before the start of the study and under treatment were included. Treatment attributes were collected from patient testimony during face-to-face interviews. Then, a DCE was performed to elicit patient preferences for certain treatment attributes. Results Sixty-seven patients completed the study. QoL improvement was the most important treatment attribute (37%), followed by IGF-I control (20%), blood sugar control (17%) and tumour control (13%). Secondary attributes were pain associated with the route of administration (7%), diarrhoea (2%), administration method (2%) and storage conditions (2%). We then calculated the theoretical share of preference for existing treatments, based on the individual preference utility for each attribute and level. Pegvisomant obtained the highest share of preference overall, and the highest preference as a second-line treatment (53 and 95%, respectively). Conclusions QoL greatly influences patient treatment preference. Since acromegaly patients are informed and aware of their disease, treatment choices should always be shared with patients.

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Section: Discussionmentioning

confidence: 99%

Preference of acromegaly patients for treatment attributes in Spain

et al. 2023

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“…39 Patients are informed or willing to be informed, and are aware and eager to take control of their disease and their treatment. 40 However, their opinion is usually disregarded.…”

Section: Discussionmentioning

confidence: 99%

Preference of acromegaly patients for treatment attributes in Spain

Fajardo‐Montañana¹,

Alvarez²,

Biagetti³

et al. 2022

EJEA

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Objective: Acromegaly is a rare disease caused by increased growth hormone secretion and a subsequent increase in insulin-like growth factor I (IGF-I) levels. Patients display multiple comorbidities that affect their quality of life (QoL). Treatment aims to maintain good biochemical control, tumour control, and reduce the risk of comorbidities; however, their impact on QoL has been overlooked until recently. We interviewed patients to explore their preferences with regard to treatment attributes.Design: Cross-sectional study based on interviews and a discrete choice experiment (DCE) in a Spanish cohort.Methods: Adult patients diagnosed with acromegaly ≥1 year before the start of the study and under treatment were included. Treatment attributes were collected from patient testimony during face-to-face interviews. Then, a DCE was performed to elicit patient preferences for certain treatment attributes.Results: Sixty-seven patients completed the study. QoL improvement was the most important treatment attribute (37%), followed by IGF-I control (20%), blood sugar control (17%), and tumour control (13%). Secondary attributes were pain associated with the route of administration (7%), diarrhoea (2%), administration method (2%), and storage conditions (2%). We then calculated the theoretical share of preference for existing treatments, based on the individual preference utility for each attribute and level. Pegvisomant obtained the highest share of preference overall, and the highest preference as a second-line treatment (53% and 95%, respectively). Conclusions:QoL greatly influences patient treatment preference. Since acromegaly patients are informed and aware of their disease, treatment choice should always be shared with patients.(244/250) SIGNIFICANT STATEMENTAcromegaly is a rare disease that progresses slowly, and diagnosis is usually delayed 2-10 years. Patients will develop physical disfigurement, diabetes, increased risk of cardiovascular pathologies, impaired quality of life (QoL), and shortened life-expectancy.Patient opinion has traditionally been overlooked when choosing treatment, which is mainly focused on improving clinical manifestations irrespective of its impact on QoL. We conducted a series of interviews and a discrete-choice experiment in 67 on-treatment patients to determine their priorities when receiving a treatment. We discovered that QoL improvement is the most important treatment attribute for patients, followed by biochemical control, sugar blood control, and tumour control. Patients showed they are well informed and aware of their disease; therefore, treatment choice should be shared with them.

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Preference of acromegaly patients for treatment attributes in Spain

Díaz-Muñoz

Fajardo

Álvarez-Escolá

et al. 2023

Preprint

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Objective Acromegaly is a rare disease caused by increased growth hormone secretion and a subsequent increase in insulin-like growth factor I (IGF-I) levels. Patients display multiple comorbidities that affect their quality of life (QoL). Treatment aims to maintain good biochemical control, tumour control, and reduce the risk of comorbidities; however, their impact on QoL has been overlooked until recently. We interviewed patients to explore their preferences with regard to treatment attributes. Design Cross-sectional study based on interviews and a discrete choice experiment (DCE) in a Spanish cohort. Methods Adult patients diagnosed with acromegaly ≥1 year before the start of the study and under treatment were included. Treatment attributes were collected from patient testimony during face-to-face interviews. Then, a DCE was performed to elicit patient preferences for certain treatment attributes. Results Sixty-seven patients completed the study. QoL improvement was the most important treatment attribute (37%), followed by IGF-I control (20%), blood sugar control (17%), and tumour control (13%). Secondary attributes were pain associated with the route of administration (7%), diarrhoea (2%), administration method (2%), and storage conditions (2%). We then calculated the theoretical share of preference for existing treatments, based on the individual preference utility for each attribute and level. Pegvisomant obtained the highest share of preference overall, and the highest preference as a second-line treatment (53% and 95%, respectively). Conclusions QoL greatly influences patient treatment preference. Since acromegaly patients are informed and aware of their disease, treatment choice should always be shared with patients.

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Acromegaly and the information gap: patient perceptions of the journey from primary to tertiary care

Cited by 3 publications

References 24 publications

Preference of acromegaly patients for treatment attributes in Spain

Preference of acromegaly patients for treatment attributes in Spain

Preference of acromegaly patients for treatment attributes in Spain

Preference of acromegaly patients for treatment attributes in Spain

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