Background Lymphoedema is recognised as a chronic condition that requires lifelong management (National Lymphoedema Partnership, 2019). One of the NHS’ core requirements for supporting individuals with a long term condition is promoting self-management, through professional led training, support and information sharing (NHS England, 2017). Clinical intervention is adapted to the patient needs, although often involves skin care, exercise, lifestyle and risk reducing advice, alongside the provision of a compression garment (British Lymphology Society, 2016).
Aim To explore palliative and non-palliative patient confidence with oedema self-management, via a clinical evaluation survey before and after a clinical intervention.
Methods New palliative and non-palliative patients attending the Dorothy House Hospice lymphoedema service between November 2020 and May 2021, received a questionnaire via post, or via their lymphoedema practitioner, for completion prior to initial assessment (Time 1), and at six weeks (palliative) or three months (non-palliative) follow-up (Time 2). Participants rated their confidence in self-managing their lymphoedema, and if swelling increased, on a five point Likert scale (Not at all confident-Very confident). Exclusion: re-referral of patient who had received previous lymphoedema input.
Results 27 patients (n=15 palliative) were invited to participate in the survey. Two patients declined participation. 25 patients took part (palliative n=15 & non-palliative n=10). Complete data n=12 participants. Incomplete data n=13 (n=1 declined participation during study, n=3 misplaced forms, n=7 died, n=2 deteriorating health).
Self confidence in managing their lymphoedema Non-palliative patients [n= 6] reported:
Not at all confident/Not confident – at T1=58% & at T2=50%,
Neutral [no change in confidence] at T1 & T2=17%,
Somewhat confident/Very confident at T1=25% & at T2=33%.
Palliative patients [n= 6] reported:
Not at all confident/Not confident – at T1=33% & at T2=8%,
Neutral [no change in confidence] at T1 & T2=25%,
Somewhat confident/Very confident at T1=42% & T2=67%.
Conclusion This small service evaluation suggests non-palliative patients are globally less confident about self-managing their lymphoedema than palliative patients pre- and post- our clinical intervention. Patients were generally more confident about their oedema management in stable and worsening conditions following clinical intervention. Further qualitative exploration with patients around their confidence in lymphoedema management, our clinical intervention and service delivery would be valuable.
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