Risk Stratification in Pulmonary Arterial Hypertension: Do Not Forget the Patient Perspective

Humbert, Marc; Lau, Edmund

doi:10.1164/rccm.202012-4350ed

Cited by 4 publications

(4 citation statements)

References 18 publications

(20 reference statements)

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“…Patient-reported HRQoL is recognized as an important and relevant outcome in PAH clinical trials and it is recommended to integrate such tools into daily clinical practice [ 5 ]. For example, most studies on physical activity interventions use one of several generic or disease-specific HRQoL measurement tools [ 27 ].…”

Section: Discussionmentioning

confidence: 99%

“…In the 6th World Symposium on Pulmonary Hypertension (Nice, 2018) first time the section “Patient Perspectives on Pulmonary Hypertension” was held to involve the representatives of patients to discuss the needs and possibilities of PAH treatment from the point of view of patients. In this session, disease-specific health-related quality of life (HRQoL) outcomes were highlighted as relevant and important results in clinical trials, and it was recommended to integrate these measurements into daily clinical practice [ 5 ]. The multidimensionality of the QoL concept embraces the subjective perspective of the individual, perception and meaning, about own life that is disclosed only in a particular context—environmental, social, and cultural.…”

Section: Introductionmentioning

confidence: 99%

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Individually Tailored Remote Physiotherapy Program Improves Participation and Autonomy in Activities of Everyday Life along with Exercise Capacity, Self-Efficacy, and Low-Moderate Physical Activity in Patients with Pulmonary Arterial Hypertension: A Randomized Controlled Study

et al. 2022

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Background and Objectives: Pulmonary arterial hypertension (PAH) is a rare, chronic, progressive, and life-threatening disease; however, the appropriate target medical treatment today allows patients with PAH not only to survive but also to live a relatively normal life. However, patients face the challenge of adapting and maintaining a good quality of life, thus it is important to consider complex interventions related not only to medical treatment. Methods: This was a prospective, randomized, controlled, single-blind study. Twenty-one (21) patients diagnosed with PAH were included and randomly assigned to training or control group. All participants continued target medical therapy. Furthermore, TG underwent the individually tailored 12-week remote physiotherapy program. As a primary outcome measurement, the Impact on Participation and Autonomy Questionnaire (IPA) was used. Secondary outcome included aerobic capacity (6MWT), accelerometery and general self-efficacy (GSE). Data were collected at baseline, after 12 weeks and at follow-up 6 months after the beginning of the intervention. Results: A significant difference between the groups was found in the follow-up assessment on three of the four IPA subscales analyzed, AO, RF, and AI. The total IPA score decreased significantly in TG after the program, indicating an improved participation. In addition, in TG a significant increase in 6MWT results, daily time in low- or moderate-intensity physical activities, and GSE was observed. Conclusions: In summary, the individually tailored physiotherapy program investigated added to stable target medical therapy in patients with PAH encourages improvement and prevents possible deterioration of perceived participation of patients in activities of their everyday life in the context of one’s health condition in the long term, along with improved exercise capacity and increased time spent in low- or moderate-intensity physical activities. Future studies are needed to develop and evaluate long-term intervention to support patients living with this rare, chronic, and life-threatening disease.

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Section: Discussionmentioning

confidence: 99%

Section: Introductionmentioning

confidence: 99%

Individually Tailored Remote Physiotherapy Program Improves Participation and Autonomy in Activities of Everyday Life along with Exercise Capacity, Self-Efficacy, and Low-Moderate Physical Activity in Patients with Pulmonary Arterial Hypertension: A Randomized Controlled Study

et al. 2022

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“…Next, the association between changes in risk and changes in clinical outcomes should be assessed across multiple trials in a future meta-analysis, ideally by pooling individual participant-level data. Additionally, it should be clearly established that changes in risk scores reflect an outcome that is important to patients (110,117).…”

Section: Proposal Of Novel Endpoints Based On Multiparametric Assessm...mentioning

confidence: 99%

The evolving landscape of pulmonary arterial hypertension clinical trials

Weatherald¹,

Boucly²,

Peters³

et al. 2022

The Lancet

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“…In den letzten Jahren wurde mehrfach über die Anwendung etablierter Fragebögen zur Erfassung der Einschränkungen durch die Erkrankung aus Sicht der Patienten berichtet [46], welche u. a. in auch in klinischen Studien mit PAH-Patienten genutzt wurden. Zudem wurden solche Fragebögen spezifisch für die PAH-Patienten entwickelt und validiert.…”

Section: Schlussfolgerungunclassified

Risikoänderung bei Patienten mit Pulmonaler Arterieller Hypertonie unter medikamentöser Therapie – Ergebnisse aus vier deutschen Zentren

Stubbe

Halank²,

Obst

et al. 2022

Pneumologie

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ZusammenfassungDie Risikobewertung für das abgeschätzte Überleben von PAH-Patienten ist eine wesentliche Grundlage für abgeleitete Therapieentscheidungen. Es existieren verschiedene Modelle für die Einschätzung des Risikos, welche jedoch weitgehend vergleichbar sind.Es wurden 131 PAH-Patienten aus den Jahren 2016–2018 hinsichtlich des Risikos nach dem ESC-/ERS-Schema ausgewertet. Etwa 2 Drittel der Patienten (mittleres Alter 64 ± 14 Jahre) wiesen ≥ 3 Komorbiditäten bzw. kardiovaskuläre Risikofaktoren auf. Zu Beginn der Beobachtung waren 13,8 % der Patienten als „low risk“, 76,3 % als „intermediate risk“ und 9,9 % als „high risk“ einzustufen. Zum Zeitpunkt der zweiten Kontrolle (im Mittel nach 12 ± 3 Monaten, Spanne 9–16 Monate) zeigten von den 111/131 (85 %) lebenden Patienten 20,7 % eine „low risk“-, 64,9 % eine „intermediate risk“- und 14,4 % eine „high risk“-Konstellation. Somit konnte lediglich ein geringer Anteil der Patienten durch die Therapie in eine günstigere Risiko-Kategorie überführt werden.Die von uns beobachteten Patienten mit einem „low risk“-Profil hatten ein Überleben von 100 % über 24 Monate. Die Patienten mit einem „intermediate risk“-Profil zeigten nach 12 Monaten ein Überleben von 96 % und nach 24 Monaten ein Überleben von 82 %. Dagegen lag das Überleben der Patienten mit einer „high risk“-Konstellation nach 12 Monaten bei 89 % und nach 24 Monaten bei nur 51 %.Trotz der aktuell verfügbaren therapeutischen Optionen konnte in unserer Analyse aus deutschen PH-Zentren nur ein kleiner Teil der PAH-Patienten während der Beobachtung in eine Niedrig-Risikogruppe mit guter Prognose überführt werden.

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Risk Stratification in Pulmonary Arterial Hypertension: Do Not Forget the Patient Perspective

Cited by 4 publications

References 18 publications

Individually Tailored Remote Physiotherapy Program Improves Participation and Autonomy in Activities of Everyday Life along with Exercise Capacity, Self-Efficacy, and Low-Moderate Physical Activity in Patients with Pulmonary Arterial Hypertension: A Randomized Controlled Study

Individually Tailored Remote Physiotherapy Program Improves Participation and Autonomy in Activities of Everyday Life along with Exercise Capacity, Self-Efficacy, and Low-Moderate Physical Activity in Patients with Pulmonary Arterial Hypertension: A Randomized Controlled Study

The evolving landscape of pulmonary arterial hypertension clinical trials

Risikoänderung bei Patienten mit Pulmonaler Arterieller Hypertonie unter medikamentöser Therapie – Ergebnisse aus vier deutschen Zentren

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