Adherence and medication belief in patients with pulmonary arterial hypertension or chronic thromboembolic pulmonary hypertension: A nationwide population‐based cohort survey

Ivarsson, Bodil; Hesselstrand, Roger; Rådegran, Göran; Kjellström, Barbro

doi:10.1111/crj.12770

Cited by 15 publications

(29 citation statements)

References 26 publications

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“…The present study used a strict method for treatment adherence, allowing only one missed daily dosage per month to be categorized as low adherence. In support of this method, the overall adherence to PAH-treatment found in the study was in good concordance with the self-reported treatment adherence of 57% from the Swedish PAH and CTEPH population that has been published earlier [7]. The patient's perception of adverse side effects that might occur, has been shown to affect the patient's decisions weather to take the drugs as prescribed or not [15,16].…”

Section: Discussionsupporting

confidence: 86%

“…Thus, it is important to address the patients concerns about a treatment, both at the time of first prescription as well as at subsequent meetings with the patient [18,19]. As shown in the present study, as well as in earlier studies, the longer time since diagnosis that has elapsed, the lower is the adherence to treatment [7,8].…”

Section: Discussionsupporting

confidence: 60%

“…Treatment with monoversus combination therapy, on the other side, is showing conflicting results [8,10]. In a recent Swedish survey, almost all patients with PAH or CTEPH said they understood why they took their drugs, but a third reported that they did not always take them according to the prescription [7]. Concerns about side effects, reported by half of the study population, likely contributed to the low adherence.…”

Section: Introductionmentioning

confidence: 98%

“…Concerns about side effects, reported by half of the study population, likely contributed to the low adherence. Further, a longer elapsed time since diagnosis and start of treatment related to lower self-reported treatment adherence [7].…”

Section: Introductionmentioning

confidence: 99%

“…Treatment side effects can make it challenging to motivate patients to follow the prescribed treatment plan over time [4]. Medication adherence as low as 50% has been reported among patients with PAH and CTEPH [5][6][7][8]. High age, the number of comorbidities and the integration of a specialist in pharmacology at the outpatient clinic have been shown to correlate with increased treatment adherence [8,9].…”

Section: Introductionmentioning

confidence: 99%

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Adherence to disease-specific drug treatment among patients with pulmonary arterial hypertension or chronic thromboembolic pulmonary hypertension

et al. 2020

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BackgroundPulmonary arterial hypertension (PAH) and chronic thromboembolic pulmonary hypertension (CTEPH) require lifelong treatment. The aim of the present study was to investigate adherence to disease specific treatment in patients with PAH or CTEPH.MethodsThe study comprised an adult population diagnosed with PAH (n=384) or CTEPH (n=187) alive in 2016–2017. The study utilised three registries; the Swedish PAH registry, the National Board of Health and Welfare and, Statistics Sweden. Withdrawals from pharmacies of disease-specific oral treatments were studied. Adherence was assessed as; 1) Number of days covered defined as the difference between the total number of daily dosages dispensed and the total number of days covered and 2) Manual assessment by two persons that independently reviewed each patient's prescription fill history to detect anomalies or patterns of deteriorating or improving adherence over time.ResultsThe mean age was 61±16 years, 61% were female and mean time since diagnosis was 4.6 years. Adherence was 62% using the Number of days covered method and 66% by the Manual assessment method. Drug specific adherence varied from 91% for riociguat to 60% for sildenafil. Good adherence was associated to shorter time since diagnosis in patients with PAH and to lower number of concomitant other chronic treatments in patients with CTEPH. Age, sex, socioeconomic status, or number of PH-treatments were not associated to adherence.ConclusionAdherence to oral disease specific treatment was 60–65% and associated to time since diagnosis and number of concomitant chronic treatments. Sex, age or socioeconomic factors did not affect adherence.

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Section: Discussionsupporting

confidence: 86%

Section: Discussionsupporting

confidence: 60%

Section: Introductionmentioning

confidence: 98%

Section: Introductionmentioning

confidence: 99%

Section: Introductionmentioning

confidence: 99%

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Adherence to disease-specific drug treatment among patients with pulmonary arterial hypertension or chronic thromboembolic pulmonary hypertension

et al. 2020

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Longitudinal changes in risk status in pulmonary arterial hypertension

et al. 2020

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Aims Low-risk status in pulmonary arterial hypertension (PAH) predicts better survival. The present study aimed to describe changes in risk status and treatment approaches over multiple clinical assessments in PAH, taking age and comorbidity burden into consideration. Methods and results The study included incident patients from the Swedish PAH registry, diagnosed with PAH in 2008-2019. Group A (n = 340) were ≤75 years old with <3 comorbidities. Group B (n = 163) were >75 years old with ≥3 comorbidities. Assessments occurred at baseline, first-year (Y1) and third-year (Y3) follow-ups. The study used an explorative and descriptive approach. Group A: median age was 65 years, 70% were female, and 46% had no comorbidities at baseline. Baseline risk assessment yielded low (23%), intermediate (66%), and high risk (11%). Among patients at low, intermediate, or high risk at baseline, 51%, 18%, and 13%, respectively, were at low risk at Y3. At baseline, monotherapy was the most common therapy among low (68%) and intermediate groups (60%), while dual therapy was the most common among high risk (69%). In patients assessed as low, intermediate, or high risk at Y1, 66%, 12%, and 0% were at low risk at Y3, respectively. Of patients at intermediate or high risk at Y1, 35% received monotherapy and 13% received triple therapy. In low-risk patients at Y1, monotherapy (40%) and dual therapy (43%) were evenly distributed. Group B: median age was 77 years, 50% were female, and 44% had ≥3 comorbidities at baseline. At baseline, 8% were at low, 80% at intermediate, and 12% at high risk. Monotherapy was the most common therapy (62%) in Group B at baseline. Few patients maintained or reached low risk at follow-ups. Conclusions Most patients with PAH did not meet low-risk criteria during the 3 year follow-up. The first year from diagnosis seems important in defining the longitudinal risk status.

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Patient perspectives on pulmonary hypertension in the United States: Burdens, expectations, and goals

Braley,

Richardson,

Whitley

et al. 2023

Pulm. circ.

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Pulmonary hypertension (PH) is a life‐threatening, debilitating disease caused by increased blood pressure in the pulmonary arteries. As patients living in the United States, we have unique insights into the journey from diagnosis and treatment within the US healthcare system and the significant impact that PH has on our quality of life. While there have recently been advances in PH management, there are several areas of PH care which we feel should be reassessed and improved. Commonly, diagnosis is lengthy and convoluted due to the rarity of the disease and limited knowledge of PH in primary care. There are also barriers to obtaining the right treatment and we feel that a more holistic approach to care is needed. Mental health is commonly overlooked and should be an integral part of patient care, as should elements such as nutritional advice, cardiopulmonary rehabilitation, and sexual health. PH patient associations play a key role in providing social, educational, and financial support to patients and caregivers alongside PH research and advocacy. As patients, we feel that we need to advocate for correct diagnosis, timely referral, and optimal treatment, in addition to overcoming the financial and/or administrative hurdles to obtain these. We propose several future goals to help empower patients to play an active, central role in their care and to improve all aspects of PH management. We advocate for further use of the patient voice in research and clinical development programs, including the use of patient‐reported outcomes that have been developed with patient input.

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Adherence and medication belief in patients with pulmonary arterial hypertension or chronic thromboembolic pulmonary hypertension: A nationwide population‐based cohort survey

Abstract: Treatment adherence is relatively high but still needs improvement. The multi-disciplinary PAH team should, together with the patient, seek strategies to improve adherence and prevent concern.

Cited by 15 publications

References 26 publications

Adherence to disease-specific drug treatment among patients with pulmonary arterial hypertension or chronic thromboembolic pulmonary hypertension

Adherence to disease-specific drug treatment among patients with pulmonary arterial hypertension or chronic thromboembolic pulmonary hypertension

Longitudinal changes in risk status in pulmonary arterial hypertension

Patient perspectives on pulmonary hypertension in the United States: Burdens, expectations, and goals

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