Introduction
- Patients should play a central role in all decision-making.
- Listening to the patients perspectives is crucial:
- To understand the global impact of their condition
- To evaluate their goals and outcomes
- To appreciate their fears, abilities, understanding and self-care strategies
- To ensure effective management with a better adherence.
Lived experience
- Living with chronic wounds influence multiple areas of a patient’s life including finances, quality of life, wellbeing, professional and social interaction
- Physical challenges include pain, discomfort, mobility limitations, permanent presence of bandages…
- These changing events affect professional, social and functional aspects of their lives, resulting in feeling of fear, sadness, depression, anger and loneliness.
Recurrence
Patients worry about recurrence and fear recurrent ulcer becoming chronic.
Prevention strategies are important:
- Education (e.g. compression therapy)
- Promotion of self-management strategies (e.g. compression stockings, skin hydration, etc.)
- Follow-up to address promptly any recurrence
Adherence to treatment
Non adherence to treatment estimates according to the WHO is as high as 50% among those living with chronic illnesses.
It’s important to consider patients’ knowledge, preferences and abilities as they would adjust care according to their own beliefs and social activities.
For example, patients find difficult to maintain rest, appropriate nutrition and compression therapy.
Motivations for adherence to treatment include:
- Wanting to improve quality of life
- Understanding treatment plans and their rationale
- Awareness of the consequences of non-adherence
Therapeutic benefit and relevant outcomes
Exploring patients’ needs and perspectives on what constitute a successful treatment outcome for themselves should be prioritized in leg ulcer management.
Assessing patient-relevant benefit in wound therapy, a research by Augustin et al. demonstrated their top ten needs prior to treatment.
As clinician-centered endpoints, patients would give priority to:
- Reduction of infection
- Improved strength of healing
- Reduction of recurrence
As endpoints that would make most difference to their lives:
- Faster healing time
- Reduction of infection
- Reduction of amputation
- Improved ability to walk/do things for themselves
Augustin M, Blome C, Zschocke I, Schäfer I, Koenig S, Rustenbach SJ, et al. Benefit evaluation in the therapy of chronic wounds from the patients’ perspective-development and validation of a new method. Wound Rep and Reg. 2012;20(1):8 14
Delayed diagnosis
Timely and accurate diagnosis is essential for faster healing and appropriate referral.
Variability in approaches to assessment, diagnosis and management of venous leg ulcers may result in delayed diagnosis.
Patients with peripheral arterial disease (PAD) have highlighted themes of delay:
- Delay in consulting primary care providers
- Minimization of symptoms
- Lack of feedback after a diagnostic test
- Not understanding the condition in their own diagnostic pathway
References
- Augustin M, Blome C, Zschocke I, Schäfer I, Koenig S, Rustenbach SJ, et al. Benefit evaluation in the therapy of chronic wounds from the patients’ perspective-development and validation of a new method. Wound Rep and Reg. 2012;20(1):8 14.
- Brtan Romić R, Brtan A, Romić I, Cvitanović H, Duvančić T, Lugović Mihić L. QUALITY OF LIFE AND PERCEPTION OF DISEASE IN PATIENTS WITH CHRONIC LEG ULCER. Acta Clin Croat. 2015;54(3):309-14.
- Castro SLS, Ferreira NMLA, Roque M, de Souza MBB. Living in a difficult situation: understanding the experience of persons with venous leg ulcers. Revista Estima. 2012;10(1):12-9.
- Cunha N, Campos S, Cabete J. Chronic leg ulcers disrupt patients’ lives: A study of leg ulcer-related life changes and quality of life. British Journal of Community Nursing. 2017;22(Sup9):S30-S7.
- Hurlow J, Hensley L,. Achieving Patient Adherence in the Wound Care Clinic. Today’s Wound Clinic. 2015.
- Järbrink K, Ni G, Sönnergren H, Schmidtchen A, Pang C, Bajpai R, et al. The humanistic and economic burden of chronic wounds: a protocol for a systematic review. Syst Rev. 2017;6(1):15.
- Kapp S, Santamaria N. The financial and quality-of-life cost to patients living with a chronic wound in the community. Int Wound J. 2017;14(6):1108-19.
- Lernevall LSD, Fogh K, Nielsen CB, Dam W, Dreyer PS. Lived experi ences of life with a leg ulcer – a life in hell. EWMA Journal. 2017;17(1):15 21.
- Olsson M, Järbrink K, Divakar U, Bajpai R, Upton Z, Schmidtchen A, et al. The humanistic and economic burden of chronic wounds: A systematic review. Wound Rep and Reg. 2019;27(1):114-25.
- Probst S, Séchaud L, Bobbink P, Skinner MB, Weller CD. The lived experience of recurrence prevention in patients with venous leg ulcers: An interpretative phenomenological study. Journal of Tissue Viability. 2020;29(3):176-9.
- Probst S, Bobbink P, Séchaud L, Buehrer Skinner M. Venous leg ulcer recurrences – The relationship to self-efficacy, social support and qual ity of life – A mixed method study. Journal of Advanced Nursing. 2020;77(1):367-75.
- Weller CD, Evans S. Monitoring patterns and quality of care for people diagnosed with venous leg ulcers: the argument for a national venous leg ulcer registry. Wound Practice & Research. 2014;22(2):68-72
- Weller CD, Richards C, Turnour L, Team V. Patient Explanation of Adherence and Non-Adherence to Venous Leg Ulcer Treatment: A Qualitative Study. Frontiers in Pharmacology. 2021;12.
