Researchers from Massachusetts General Hospital and Harvard Medical School have developed a primary palliative care framework to improve cystic fibrosis (CF) patient care and reduce the symptom burden. This model aims to integrate palliative care with standard CF therapies to promote a positive effect on the long-term quality of life for these patients.
The results were reported in the study titled “The CF-CARES primary palliative care model: A CF-specific structured assessment of symptoms, distress, and coping,” published in the Journal of Cystic Fibrosis. The study is integrated in a CF clinical project called CF-CARES (Coping, goal Assessment, and Relief from Evolving Symptoms of Cystic Fibrosis).
Palliative care is a multidisciplinary approach for patients with serious diseases to relieve their suffering by improving their pain, physical symptoms, and psychological distress.
Recent developments in cystic fibrosis treatments have significantly improved the outcome of the disease. But for many patients, the condition is associated with distress due to chronic symptoms such as pain, difficulty breathing, cough, fatigue, and insomnia. This can negatively impact CF treatment adherence and overall quality of life.
Palliative treatments have been shown to help CF patients cope with distressing factors associated with the disease. In many cases, however, patients are introduced to palliative care in later stages of the disease, which may not be the best way to manage the condition.
Based on previous assessments and implementation of a primary palliative care training curriculum tailored to CF care, the authors of the study developed a pilot model of routine implementation of a CF-specific primary palliative care intervention.
A total of 41 adolescents and adults with cystic fibrosis were included in the study.
After patient evaluation, the authors reported that about 34 percent showed signs of anxiety and 44 percent had depression. These psychological symptoms correlated with distress from CF physical symptoms and difficulty with disease self-management, but not with disease severity.
The results indicate that each CF patient may require specific counseling and support, suggesting an individualized evaluation and a palliative care intervention.
Among the available post-assessment services provided during the study, CF patients requested mainly cognitive-behavioral therapy (20 participants) and acupuncture/acupressure (19 participants).
“Acceptability of and satisfaction with the structured assessment was highly favorable; 100% of participants were ‘satisfied’ or ‘very satisfied’ with the assessment visit,” the researchers reported.
About 95 percent of the patients agreed that discussing the challenges of living with CF was helpful, and 85 percent found that the assessment identified most of the patient’s ‘bothersome CF-related symptoms.’ The majority of patients believed this process helped them identify and prioritize the symptoms that needed to be addressed.
“Participants reported a high rate of satisfaction with the CF-CARES assessment process, suggesting the acceptability and feasibility of a model that features primary palliative care assessment and referral to supportive services,” the authors stated.
Focusing on early assessment and treatment of CF-associated symptoms, as well as distress and coping, this palliative care model is expected to provide caregivers information to support an individualized symptom management plan, which more likely will enhance self-management, health outcomes, and quality of life for cystic fibrosis patients.
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