Swedish survey exposes gaps in internal lymphedema care

A research team has found that internal head and neck lymphedema, a common consequence of head and neck cancer treatment, often falls into a gap between rehabilitation professions in Sweden. Speech-language pathologists, physiotherapists, and lymphedema therapists reported limited confidence, inconsistent assessment, and few evidence-based treatment options. The findings establish a national baseline for improving professional training, clinical guidelines, referral pathways, and multidisciplinary care, with the longer-term goal of helping survivors receive earlier and more effective rehabilitation.

Internal head and neck lymphedema develops when cancer treatment damages or obstructs lymphatic drainage, causing fluid to accumulate in the oral cavity, pharynx, or larynx. Reported prevalence after head and neck cancer treatment ranges from 74% to 96%, and the condition can impair swallowing, breathing, speech, voice, and quality of life. Endoscopic grading systems are available, while imaging approaches are emerging, but no clinical consensus or high-quality evidence identifies an effective treatment. International studies have also documented variable practice, unclear professional responsibilities, and unequal access to specialist services. Because professional roles differ among healthcare systems, a broad national assessment was needed to clarify how internal lymphedema is currently managed in Sweden.

A study (DOI: 10.48130/ejcc-0026-0005) published in European Journal of Cancer Care on 14 July 2026 by Karin Sjögren's team, Lund University, reports that Swedish rehabilitation professionals lack consistent assessment routines, sufficient competence, and evidence-based methods for managing the condition.

The researchers conducted a cross-sectional observational study using profession-specific web surveys distributed in Sweden from January 11 to February 29, 2024. Eligible respondents were speech-language pathologists, physiotherapists, and lymphedema therapists who had treated more than one patient with head and neck cancer during the previous year. Recruitment began through professional networks and continued through snowball sampling. The surveys combined multiple-choice questions about experience, assessment, treatment, and self-rated competence with two open-ended questions about challenges and additional observations. Quantitative responses were summarized using descriptive statistics, while free-text responses underwent systematic text condensation. Of 69 respondents, 65 met the eligibility criteria: 28 speech-language pathologists and 37 physiotherapists and/or lymphedema therapists. Only 25% in each professional group routinely documented internal lymphedema, whereas 39% of speech-language pathologists and 25% of physiotherapists/lymphedema therapists never recorded it. Although flexible endoscopic evaluation of swallowing was available to 75% of speech-language pathologists, only 7.1% used the revised Patterson Edema Scale. Physiotherapists and lymphedema therapists mainly relied on palpation, unaided inspection, patient reports, or assessments made by other professionals; their treatments largely adapted approaches used for external lymphedema, including manual drainage, physical activity, and compression. Speech-language pathologists rarely treated internal lymphedema and most commonly referred patients elsewhere, although 54% said it influenced dysphagia rehabilitation and 89% said it affected voice rehabilitation. Self-rated competence was predominantly nonexistent or limited: only 8% of speech-language pathologists and 11% of physiotherapists/lymphedema therapists rated it as good or very good. Nearly nine in ten respondents wanted further education, and virtually all reported a need for professional development. Qualitative analysis identified four connected themes—lack of awareness, the condition's difficult-to-observe location, insufficient methods and guidelines, and weak multidisciplinary collaboration—showing how unclear responsibilities and delayed referrals can leave patients without coordinated care.

The study concludes that internal head and neck lymphedema is recognized and addressed only inconsistently across Swedish cancer rehabilitation. Each profession holds relevant but incomplete expertise: physiotherapists and lymphedema therapists understand lymphatic physiology and treatment, while speech-language pathologists bring knowledge of swallowing, voice, and upper-airway function as well as access to endoscopic assessment. Combining these strengths through shared routines, targeted education, timely referral, and multidisciplinary teams could help close the current care gap. The authors also call for rigorous studies to validate assessment tools and determine whether existing or emerging interventions can reduce internal swelling and improve patient function.

###

References

DOI

10.48130/ejcc-0026-0005

Original Source URL

https://doi.org/10.48130/ejcc-0026-0005

Funding information

This work was supported by the Sjöberg Foundation and Swedish Association of Chronic Oedema.

About European Journal of Cancer Care

European Journal of Cancer Care (e-ISSN 1365-2354) is an open-access, peer-reviewed journal dedicated to publishing original research on multiprofessional cancer care. The journal provides a forum for multiprofessional and service-user dialogue, and the reporting of original research or rigorous reviews within the field of cancer care both in Europe and internationally.