Exploring the experiences of patients with primary and secondary, non-cancer related, lower limb lymphoedema during the intensive and maintenance phases of Complex Decongestive Therapy and its’ impact on their lives

Introduction

Lymphoedema is an incurable, progressive condition, which results in the swelling of a limb or limbs and impairs mobility (Lymphatic Framework, 2006). The psychosocial impact of lower limb lymphoedema is also devastating as body image and quality of life are greatly affected (Lasinski et al, 2012). Although lymphoedema is a chronic condition, it is manageable through treatment modalities which include manual lymphatic drainage, compression bandaging, compression hosiery, skin care and exercise, otherwise known as Complex Decongestive Therapy (CDT) (Todd, 2012). The area of lower limb, non-cancer related, lymphoedema is poorly resourced and poorly researched, therefore this thesis proposes to explore treatment outcomes for patients with non-cancer related lower limb lymphoedema during the intensive and maintenance phases of CDT,examine their experiences of living with lymphoedema and the challenges of lifelong self-care maintenance.

Research Questions

The research questions for the study were as follows;

1. What is the impact of Complex Decongestive Therapy (CDT) as a treatment for primary and secondary lower limb lymphoedema during the intensive and maintenance phases of CDT, in relation to;

a. Quality of life?

b. Limb circumferential and volumatic changes?

c. Self-efficacy in managing lymphoedema self care?

2. What are the patients’ experiences of living with lymphoedema?

3. What are the patients’ experiences of the four elements of CDT used during the intensive and maintenance phases of treatment?

Aims & Objectives

The aims of this study were twofold;

1. To examine the impact of Complex Decongestive Therapy (CDT) as a treatment for primary and secondary, non-cancer related, lower limb lymphoedema during the intensive and maintenance phases of CDT;

2. To explore the experiences of patients with primary and secondary, non-cancer related lower limb lymphoedema during the intensive and maintenance phases of CDT.

The objectives of the study are as follows:

1. To determine the impact of CDT on limb circumference and quality of life.

2. To explore the patients’ experience of living with lymphoedema.

3. To investigate the patients’ reported experience of the four elements of CDT.

4. To examine the patients’ reported maintenance regimen of self-care and its resulting effect on limb volume and quality of life.

Methods

A mixed methodology, using both quantitative and qualitative data in a sequential manner was used. This study was divided into 3 parts,

Part 1 a quantitative approach was used to measure;

a) Limb volume changes.

b) Quality of Life changes

c) Self-efficacy

Part 2 –A qualitative approach was used to analyse data from face to face, semi-structured interviews with 18 participants exploring the experiences of patients living with lymphoedema and their experiences of Complex Decongestive Therapy.

Part 3 – Descriptive analysis of 18 participant diaries was used during maintenance self-care, over a 4-month period, to examine the participants’ experiences of lymphoedema self care.

Results

A purposive sample of 20 participants were recruited to this study All participants were diagnosesd with lower limb lymphoedema, 10 participants had primary lymphoedema and 10 participants had secondary, non-cancer related lymphoedema. The study setting was a lymphoedema clinic in the Midlands of Ireland, run by the researcher who is also a Tissue Viability Nurse and Manual Lymphatic Drainage Therapist.

The findings included a reduction in limb volume from baseline to week 8 during intensive therapy and then a fluctuation of oedema for 6 of the participants during the 4-month self-maintenance period. Quality of life improved for all participants from baseline to week 24. Thematic analysis of the interviews identified themes of lack of knowledge, delayed diagnosis, physical, psychosocial and financial burden of lymphoedema and positive therapeutic effect of treatment. The diary analysis identified self-care challenges that were influenced by elevated body mass index and carer support.

Conclusion

Primary and secondary, non-cancer related lower limb lymphoedema is an area of lymphoedema that is poorly researched. It is also true to say that there is a sparsity of research in the area of lymphoedema self maintenance care. The aims of this research study were twofold, to explore patient outcomes with regard to limb volume, quality of life and self-efficacy during the intensive and maintenance phases of CDT and to examine the experiences of the patients living with lymphoedema, during their treatment and following on into self maintenance. The findings included reduction in limb volume during therapy, an improvement in quality of life and a fluctuation in self-efficacy that was influenced by elevated body mass index. Thematic analysis of interviews concluded that living with lymphoedema poses many challenges resulting from poor knowledge within the health professions and a lack of referral pathways and services. The success of lymphoedema self maintenance is greatly influenced by the patients physical ability and support structures, especially in the case of the patient with an elevated body mass index.