Descriptions of the Pain Experience in Adults and Adolescents with Cystic Fibrosis

Allgood, Sarah; Kozachik, Sharon; Alexander, Kamila A.; Thaxton, A.; Vera, Montserrat; Lechtzin, Noah

doi:10.1016/j.pmn.2017.11.011

Cited by 15 publications

(9 citation statements)

References 24 publications

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“…Pain is a well described modulator of sleep quality in chronic illness, with bi-directional relationship through which poor sleep increases pain perception and severe pain impairs sleep [37,38]. Specifically in CF, both children and adults, report higher prevalence of chronic pain and perceive the disease as being painful [39]. Recently, chronic pain in CF patients has been reported as a correlate of poor sleep and reduced quality of life [40].…”

Section: Discussionmentioning

confidence: 99%

Sleep disorders in patients with primary ciliary dyskinesia, cystic fibrosis with and without pancreatic insufficiency

Cohen‐Cymberknoh

Atia

Gileles‐Hillel

et al. 2019

Respiratory Medicine

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Background: Cystic fibrosis (CF) and primary ciliary dyskinesia (PCD) are characterized by impaired mucociliary clearance causing sinopulmonary infections and airway inflammation. However, they differ in many aspects including multisystemic involvement and disease severity. Aim: To compare sleep disorders and their correlation with quality of life (QOL) in three distinct patient populations: CF and pancreatic insufficiency (CF-PI), pancreatic sufficiency (CF-PS) and PCD. Methods: Patients completed age appropriate sleep quality questionnaires (SDSC, PSQI), quality of life questionnaires (PedQL, QOL-BE) and the Epworth sleepiness scale (ESS). Medical records were reviewed for clinical data. Results: Eighty patients, 33 CF-PI, 27 CF-PS, and 20 PCD; 40 females; 41 adults and 39 children completed the study. In adults, 66% slept less than 7 h per night, and sleep quality was reduced in 26.5%, 53% reported night wakings and 47% nocturnal snoring or coughing. In children 78% slept more than 8 h, SDSC scores were mostly in the normal range. A significant correlation was found between sleep quality and QOL in both age groups. Global sleep scores were correlated with hemoglobin levels. Despite differences in disease severity and QOL, there were no significant differences in sleep quality between the three groups. Conclusion: Sleep disorders are common and correlate with QOL in CF and PCD. Despite differences in disease characteristics and severity, there are no differences in terms of sleep disorders between CF-PI, CF-PS and PCD patients, suggesting that they may represent indirect outcomes of disease.

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Section: Discussionmentioning

confidence: 99%

Sleep disorders in patients with primary ciliary dyskinesia, cystic fibrosis with and without pancreatic insufficiency

Cohen‐Cymberknoh

Atia

Gileles‐Hillel

et al. 2019

Respiratory Medicine

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“…11,15 Additional research has investigated the prevalence and effect of pain on individuals with CF. [5][6][7][8][9]16 Despite the increased research interest, there has not been sufficient evidence to support the addition of manual physical therapy over standard care to address postural impairments. 11 This case report outlines the course of chest pain in a child with CF suspected to be the result of altered mechanics of breathing after a pulmonary exacerbation.…”

Section: Discussionmentioning

confidence: 99%

“…1 Adherence to these techniques is negatively affected by the presence of pain, a symptom that has been underestimated in this population. [5][6][7] Eighty-four percent of adults with CF report chronic pain, and 75% of children with CF complain of some form of pain. 7,8 Chest pain has been the most commonly reported location of pain, and the majority of chest pain was found to be musculoskeletal in origin.…”

Section: Introductionmentioning

confidence: 99%

“…8 Pain negatively impacts healthrelated quality of life and adherence to treatment, and increases pulmonary exacerbations. [5][6][7]9 Increased respiratory effort and inefficient muscle function and fatigue may result in musculoskeletal changes and associated pain, affecting posture, ease of breathing, comfort, and overall quality of life. 4 Recent research has focused on the inclusion of chest wall and postural measurements as outcome measures of physical therapy intervention.…”

Section: Introductionmentioning

confidence: 99%

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An Unusual Presentation of Chest Pain in a Patient With Cystic Fibrosis: A Case Report

Traylor

DiPilla-George

Tirakitsoontorn

2021

Pediatric Physical Therapy

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Purpose: This case report describes the identification and treatment of costochondritis with suspected neural entrapment in a 14-year-old individual diagnosed with cystic fibrosis. Summary of Key Points: The individual discussed in this report had resolution of his chest pain with additional improvement in pulmonary function test results. Statement of Conclusion and Recommendations for Clinical Practice: This case supports the need for musculoskeletal and neuromuscular screening and intervention for patients with cystic fibrosis. The success of the intervention suggests that when traditional approaches to treatment of costochondritis fail, use of myofascial release at the accessory muscles of breathing could be beneficial.

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“… 1 Sources of pain may be attributable to identifiable causes such as missed pancreatic enzyme doses or sinus infections, but there is a subset of individuals who experience debilitating pervasive and chronic pain with no discernable cause. 2 Regardless of cause and location, pain in CF has been associated with decreased health-related quality of life, depression and increased risk of mortality independent of disease severity, age, and sex. 3 , 4 There is a paucity of evidence and lack of clinical guide-lines addressing pain management strategies, including what role opioids have in treating pain in CF.…”

Section: Introductionmentioning

confidence: 99%

Satisfaction and effectiveness of opioid pain management among adults with cystic fibrosis: A mixed methods study

Allgood

Zemlak

Dellon³

et al. 2022

Journal of Cystic Fibrosis

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Background: Chronic pain is common among people living with cystic fibrosis (CF) and associated with worse clinical outcomes. Despite this, little is known about how pain is managed and how opioids are used to treat pain. The purpose of this convergent mixed methods study was to examine self-reported satisfaction and effectiveness of pain management strategies among a sample of adults with CF who are prescribed opioids. Methods:We developed an online survey querying 4 domains -demographics, pain characteristics, pain communication, and management strategies. This was distributed nationally to adults with CF (n = 48) via various online platforms. We obtained quantitative and qualitative responses regarding satisfaction and effectiveness of pain management. Emerged themes from qualitative data were compared with responses from quantitative survey domains.Results: Participants reported high levels of satisfaction and effectiveness with their opioid pain management plans. However, qualitative themes emerged regarding fears of addiction, experiences of feeling stigmatized by the healthcare system and ineffectiveness and inefficiency of alternative therapies for adequate pain relief.Conclusions: Adults with CF reported opioids as an important component of their current pain management plans despite risks associated with opioid use. CF-specific pain management guideline development is warranted as is further research exploring pain development.

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Descriptions of the Pain Experience in Adults and Adolescents with Cystic Fibrosis

Cited by 15 publications

References 24 publications

Sleep disorders in patients with primary ciliary dyskinesia, cystic fibrosis with and without pancreatic insufficiency

Sleep disorders in patients with primary ciliary dyskinesia, cystic fibrosis with and without pancreatic insufficiency

An Unusual Presentation of Chest Pain in a Patient With Cystic Fibrosis: A Case Report

Satisfaction and effectiveness of opioid pain management among adults with cystic fibrosis: A mixed methods study

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