PH Professional Network: Holistic Assessment of the New Patient With Pulmonary Hypertension: The Role of the Non-Physician Clinician

Pulmonary hypertension (PH) does not discriminate based on social support, health literacy, emotional bandwidth, or socioeconomic status. Evaluating these factors provides an elemental foundation to best foster the patient's adherence and success. The non-physician clinician plays a pivotal role in assessment of the new patient.

Evaluation of the patient begins with first contact, whether in person, by telephone or records review. This offers a glimpse of the patient's journey. Telephone screening provides insight into the patient's current knowledge base. Understanding when and how the patient learned of his or her diagnosis, the location and results of testing done thus far, and historical treatment attempts identify a point of origin from which to request records, help avoid duplication of evaluation, and lay the foundation for establishing the patient and caregiver as integral members of the PH team, as well as identifying and beginning to fill knowledge gaps. Common practice is to obtain medical records before the appointment, allowing acuity determination to influence scheduling urgency. Additionally, a thorough records evaluation guides the appointment: for example, the conversation with a patient with well documented, severe chronic obstructive pulmonary disease (COPD) is different from that with a patient with PH in the setting of left-sided heart disease and distinctive still from idiopathic PH.

The appointment enables the clinician to gather even more information. Physical assessment, touch, and face-to-face communication help establish a foundation for a healthy, trusting partnership with the PH care team. To accomplish a meaningful encounter, these characteristics should be assessed:

• Ambulation: Can the patient walk unaided? If not, what is the limiting factor? Is it shortness of breath, orthopedic issues, or their footwear?

• Dexterity: Could the patient manipulate a pump? Observe their hands and their dexterity. Can they turn the oxygen tank on and off independently? Can they work a remote control? Do they have blisters or ulcers on their fingers? The patient's dexterity may affect abilities to manage infusion or inhalation devices.

• Vision: Is their vision adequate? Do they use glasses or contacts? Are they legally blind? Will they be able to read small screens on devices?, program pumps, or mix medications?

• Hearing: Can they hear well? Do they have hearing aids? Could they hear an electronic alarm?

• Self-care: Is the patient able to care for themselfs? Are they well groomed? How are their teeth?

• Social support: Did they come alone to the appointment? Did a family member or friend come with them? Does anyone visit them in the hospital? Lack of self-care can be an indicator of other issues such as depression, financial stability, or disease severity. You may hear “I'm too tired to wash my hair,” or “I feel faint when I shower.” Some therapies are cumbersome to manage and may cause patients to feel overwhelmed. Knowledge of the depth of caregiver support should be considered when choosing the type of therapy. These elements can be observed without ever touching the patient and will help the clinician better understand the patient's needs.

Other considerations should include the following:

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  The patient and caregiver's ability to read and write. Printed teaching materials, including charts for daily weight or prostanoid titration schedule, should be provided at the patient's literacy level.

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  Potential language barriers should be assessed. Early notification of the patient's primary language helps the specialty pharmacy plan and provide appropriate resources for training, education, and ongoing services, including medication reorders and copayment support.

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  Evaluation for medical nonadherence with prescribed medications and treatments: Are medication doses missed? Is the patient wearing oxygen at levels prescribed at rest, with exertion, and sleep? Using prescribed CPAP or BiPAP? Participating in a structured rehab program? Identifying areas of nonadherence is the first step. Next, the clinician should attempt to detect barriers to adherence. Is the patient experiencing side effects? Copay issues? Are self-image, depression, or anxiety being appropriately addressed?

Together, these components will influence the evaluation and management of the patient with PAH. A better understanding of the diagnosis of PAH empowers the patient and their caregivers. An important responsibility of the nurse clinician is the education of patients and caregivers, personalized to their needs. Quality, up-front education reinforces the patient-center care model and influences conversations going forward.

The nurse clinician plays the role of liaison in the multidisciplinary team, enabling the appropriate contacts between the PH care team, the patient, and their families. The clinician can support patient adherence and recognizes the need for social and psychosocial support. The role of the PH clinician is one that encompasses a variety of skill sets. It is an action role with holistic responsibilities. Even beyond the new patient, the nurse clinician frequently evaluates the process of care and acts as an intermediary between the multidisciplinary team, the patient, and their caregiver. The basis of the initial evaluation shapes the approach to patient care and connects goals and expectations to living with PAH.