Table 4.
Longitudinal and outcome studies
| Subjects | Methods | Measures | Results | Conclusions | Country and year | Reference |
|---|---|---|---|---|---|---|
| 25 patients with lymphoedema following surgery/radiotherapy for breast cancer. | Cohort evaluated pre‐intensive versus postintensive treatment phase (4 weeks) and at 1, 6 and 12 months of a self‐management phase. | FLIC and WCLS Need for assistance scale (devised by authors) and body image scale (devised by authors). | WCLS scores remained lower than FLIC throughout study with WCLS scores lowest during intensive treatment but surpassed pre‐treatment scores during self‐management phase. QoL scores did not reflect changes in oedema. | Study confirms that a combination of intensive treatment and education for self‐management can reduce swelling and improve quality of life. WCLS appears to be sensitive and discriminating in monitoring patients receiving treatment for lymphoedema. | Australia 1995 | (28) |
| 69 women with upper limb lymphoedema seeking rehabilitation therapy following treatment for breast cancer. | Cohort evaluated at one time point — on referral to rehabilitation service of a lymphoedema clinic. | BSI, IES, DSFI, FIQ, SSQ6, ISEL, DWICI. | Women with upper limb lymphoedema had high levels of psychological distress and high levels of sexual, functional, and social dysfunction. These findings were increased for women with lymphoedema in the dominant hand and who had pain of any intensity. Those with pain also perceived lower levels of interpersonal support. Low social support and an avoidant coping style were correlated with psychological distress. No correlation between severity of lymphoedema and levels of distress. | Patients with upper limb lymphoedema may benefit from psychological and sexual therapy in addition to physical rehabilitation. Assessment of pain, social support and coping styles may be beneficial for this patient group as would a psycho‐ educational and support group within the lymphoedema clinic. | USA 1995 | (31) |
| 16 patients attending a breast unit following treatment for breast cancer. | Cohort evaluated pre‐implementation versus post‐implementation (12 weeks) of clinical guidelines for the management of breast‐cancer‐related lymphoedema | SF‐36, EORTC QLQ‐C30. | Stable or improved scores in all categories of physical, social, and emotional functioning. Stable or measured decrease in limb volume for 75% of cohort. | Importance of the development and implementation of research based, patient‐centred guidelines. | UK 1996 | (27) |
| 34 patients with unilateral or bilateral chronic oedema of upper or lower limbs attending a nurse‐managed lymphoedema clinic. | Cohort evaluated pre‐treatment versus posttreatment using a conservative treatment regime. | NHP‐1 at baseline and 4 weeks after completion of initial treatment phase. Clinical assessment including skin condition and limb volume. | Significant improvement in energy, pain and physical mobility (P≤0·05). Change in volume not associated with a change in any NHP‐1 subscale. Significant correlation found between improvement in skin condition and improvement in pain subscale scores (P=0·01). | NHP‐1 useful in assessment of physical domains of HRQoL but less useful in psychological and emotional limb movement equally limb movement equally important treatment outcome measures as limb volume. | UK 1997 | (32) |
| 101 consecutive, unselected patients who had undergone breast surgery for cancer. | Patients divided into three groups: 1. Surgery without ALND (−ALND) 2. With ALND, no lymphoedema (−LE) 3. With ALND, with lymphoedema (+LE) Evaluation time point ranged from 6 months to 4 years following surgery. | SF‐36 at one time point. | Patients in −ALND and −LE groups had similar scores in all domains of SF‐36. Patients in +LE group had significantly impaired quality of life in role‐emotional (P=0·03) and bodily pain domains (P=0·08). Comparison with national norms showed that significantly higher percentage of +LE group was below one SD in domains of bodily pain (P=0·005), mental health (P=0·01) and general health (P=0·04). | Lymphoedema can produce significant impairments in the quality of life of post‐operative breast cancer patients. Selective ALND or sentinel lymph node biopsy could reduce incidence of lymphoedema in this patient group. | US 1999 | (26) |
| 36 patients with lymphoedema of various causes. | Cohort evaluated pre‐treatment and posttreatment with Complete Decongestive Therapy (CDT). | Disease‐specific tool measuring physical, functional and psychosocial concerns (devised by authors). | Significantly greater improvement in QoL scores for patients with lower lymphoedema (P<0·05). No correlation between oedema volume reduction and posttreatment QoL improvement. | CDT can bring significant improvement in QoL of patients with lymphoedema which is not correlated with limb volume reduction. | USA 2002 | (33) |
| 54 patients with lower limb lymphoedema secondary to lymphatic filariasis in a clinic in Guyana. | Comparison of disease severity of lymphoedema secondary to lymphatic filariasis with DLQI score. | DLQI at one time point compared with disease severity using Dreyer score and number of AIEs during last year. | Patients with a higher disease severity (Dreyer score) had a higher DLQI score (correlation coefficient 0·3). Increased number of AIEs correlated with an increased DLQI score (correlation coefficient 0·56) | Confirms correlation between disease severity and DLQI scores and indicates DLQI as a useful tool for the measurement of QoL for limb lymphoedema secondary to lymphatic filariasis. | Guyana/UK 2003 | (30) |
| 11 patients with limb lymphoedema secondary to lymphatic filariasis in Guyana. | Cohort evaluated pre‐introduction versus postintroduction of a nurse‐led hygiene, skin care and education regimen. | DLQI, and disease severity using Dreyer score at baseline and after 1 year. | Significant improvement in DLQI scores (P≤0·0001) for all patients and reported AIEs reduced. | A nurse‐led service combined with patient education in communities endemic for lymphatic filariasis is an effective intervention for improving HRQoL of patients with lymphoedema. | Guyana 2003 | (29) |
AIE, acute inflammatory episode; ALND, axillary lymph node dissection; BSI, Brief Symptom Inventory; DLQI, Dermatology Life Quality Index; DWICI, Dealing With Illness‐Coping Inventory; EORTC QLQ‐C30, European Organization for Research of Cancer Core Quality of Life Questionnaire; FIQ, Functional Interference Questionnaire; FLIC, Functional Living Index‐Cancer; IES, Impact of Events Scale; ISEL, Interpersonal Support Evaluation List; NHP‐1, Nottingham Health Profile Part 1; SF‐36, Medical Outcomes Study‐Short Form; SSQ6, Social Support Questionnaire – Short Form; WCLS, Wesley Clinic Lymphoedema Scale.