Palliative Care in Patients With Primary Cutaneous Lymphoma: Symptom Burden and Characteristics of Hospital Palliative Care Team Input

What are the supportive and palliative care needs of patients with cutaneous T-cell lymphoma and their caregivers? A systematic review of the evidence

“…27,37 Our clinical experience is that pain may be linked to dressing changes, may be called 'soreness' rather than pain, and may be more significant later in the disease, which may explain the high prevalence of pain reported by a palliative care service. The most commonly reported physical symptom was pruritus, which was seen as a significant symptom to both patients and clinicians.…”

“…Pain was reported less often, possibly because it is not a significant problem or because it is not always asked about. 27,37 Our clinical experience is that pain may be linked to dressing changes, may be called 'soreness' rather than pain, and may be more significant later in the disease, which may explain the high prevalence of pain reported by a palliative care service. 37 Physical symptoms, in particular pruritus, frequently improved with disease-directed treatment.…”

“…27,37 Our clinical experience is that pain may be linked to dressing changes, may be called 'soreness' rather than pain, and may be more significant later in the disease, which may explain the high prevalence of pain reported by a palliative care service. 37 Physical symptoms, in particular pruritus, frequently improved with disease-directed treatment. Psychosocial needs were reported less commonly; although there is evidence that these domains are of importance to patients, only one paper suggests an intervention that specifically addressed this area.…”

‘We had to change to single beds because I itch in the night’: a qualitative study of the experiences, attitudes and approaches to coping of patients with cutaneous T-cell lymphoma

“…The incidence of CTCL is 7Á7 per 1 000 000 personyears with a male : female ratio of 1Á72 : 1. [3][4][5] We conducted a systematic review of the literature to explore the impact of CTCL on patients and caregivers, which demonstrated a significant impact on patients' psychological well-being and quality of life, highlighting the severe symptom burden of CTCL, particularly pruritus and pain. More advanced stages (IIB-IVB) can progress more quickly and have a worse prognosis [median survival 4Á7 (IIB) to 1Á4 (IVB) years].…”

“…Symptoms include pruritus and sometimes pain. [3][4][5] We conducted a systematic review of the literature to explore the impact of CTCL on patients and caregivers, which demonstrated a significant impact on patients' psychological well-being and quality of life, highlighting the severe symptom burden of CTCL, particularly pruritus and pain. 4 Although quantitative quality of life data is emerging, there is a dearth of qualitative evidence regarding the lived experience of CTCL.…”